“It's a Constant Fight:” Experiences of College Students with

Journal of Postsecondary Education and Disability, 32(3), 247-261

247

“It’s a Constant Fight:”

Experiences of College Students with Disabilities

Grace L. Francis¹

Jodi M. Duke¹

Megan Fujita¹

Jason C. Sutton¹

George Mason University

Abstract

Despite the increase in students with disabilities attending college, the graduation rates of these students

consistently lag behind their peers without disabilities. Although services provided by college disability

service offices are designed to prevent discrimination and support student success, a limited body of re-

search documents the effectiveness of services delivered to students with disabilities in college. Further,

little is known about the perspectives of students with disabilities in the U.S., including in-depth qualitative

research among diverse students. The purpose of this qualitative study was to explore the perceptions and

experiences of eight college students with disabilities. Participants described disempowering experiences,

empowering experiences, reported information about the impact of their families, and provided recommen-

dations for stakeholders to better support individuals with disabilities. Implications for practice and future

research are reported.

Keywords: college, disability, services, barriers, qualitative

The rate of students with disabilities attending

college in the U.S. continues to rise (Smith, 2007),

with some researchers estimating the number of stu-

dents tripling or even quadrupling over the past two

decades (Barnard-Brak, Lechtenberger, & Lan, 2010;

Brown & DiGaldo, 2011). This rise may be due to sev-

eral factors, including effective transition planning in

high school (Morningstar & Mazzotti, 2014); paren-

tal education (Wang, Chang, & Lew, 2009); external

motivation (e.g., enhanced job prospects; Reed, Ken-

nett, & Emond, 2015); and greater rates of disclosure

among individuals with disabilities attending college

(Vickerman & Blundell, 2010). Despite this increase

in students with disabilities attending college, the

graduation rates of these students consistently lag be-

hind their peers without disabilities (Anastopoulos &

King, 2015; Grogan, 2015). For students with disabil-

ities, postsecondary degree completion rates range

from 29% at four-year universities, 30% at two-year

colleges, and 55% at vocational or technical schools,

with no significant differences in completion rates by

race or ethnicity, gender, disability category, or par-

ents’ household income (Sanford et al., 2011).

Section 504 of the Rehabilitation Act (1973) aims

to support college students with disabilities through

disability service offices located on campuses. These

offices provide services and supports such as extend-

ed time to complete assignments, extended deadlines

to receive a degree, course substitutions, instructional

adaptations, use of tape recorders, audio texts, inter-

preters, and adapted classroom equipment (34 C.F.R.

Part 104). However, students must disclose their dis-

ability and maintain an up-to-date evaluation in order

to receive these services (Van Hees, Moyson, & Ro-

eyers, 2014). Further, although these services are de-

signed to prevent discrimination and support student

success, a limited body of research documents the

effectiveness of services delivered to students with

disabilities in college (Gelbar, Smith, & Reichow,

2014; Grogan, 2015). Moreover, additional barriers,

including (a) a lack of preparation for college in high

school (Francis, Duke, Brigham, & Demetro, 2018);

Despite the increase in students with disabilities attending college, the graduation rates of these students

consistently lag behind their peers without disabilities. Although services provided by college disability service

offices are designed to prevent discrimination and support student success, a limited body of research

documents the effectiveness of services delivered to students with disabilities in college. Further, little is known

about the perspectives of students with disabilities in the U.S., including in-depth qualitative research among

diverse students. The purpose of this qualitative study was to explore the perceptions and experiences of eight

college students with disabilities. Participants described disempowering experiences, empowering experiences,

reported information about the impact of their families, and provided recommendations for stakeholders to better

support individuals with disabilities. Implications for practice and future research are reported.

The rate of students with disabilities attending college in the U.S.

continues to rise (Smith, 2007), with some researchers

estimating the number of students tripling or even quadrupling

over the past two decades (Barnard-Brak, Lechtenberger, & Lan,

2010; Brown & DiGaldo, 2011). This rise may be due to several

factors, including effective transition planning in high school

(Morningstar & Mazzotti, 2014); parental education (Wang,

Chang, & Lew, 2009); external motivation (e.g., enhanced job

prospects; Reed, Kennett, & Emond, 2015); and greater rates of

disclosure among individuals with disabilities attending college

(Vickerman & Blundell, 2010). Despite this increase in students

with disabilities attending college, the graduation rates of these

students consistently lag behind their peers without disabilities

(Anastopoulos & King, 2015; Grogan, 2015). For students with

disabilities, postsecondary degree completion rates range from

29% at four-year universities, 30% at two-year colleges, and

55% at vocational or technical schools, with no significant

differences in completion rates by

race or ethnicity, gender, disability category, or parents’

household income (Sanford et al., 2011). Section 504 of the

Rehabilitation Act (1973) aims to support college students with

disabilities through disability service offices located on

campuses. These offices provide services and supports such as

extended time to complete assignments, extended deadlines to

receive a degree, course substitutions, instructional adaptations,

use of tape recorders, audio texts, interpreters, and adapted

classroom equipment (34 C.F.R. Part 104). However, students

must disclose their disability and maintain an up-to-date

evaluation in order to receive these services (Van Hees,

Moyson, & Roeyers, 2014). Further, although these services are

designed to prevent discrimination and support student success,

a limited body of research documents the effectiveness of

services delivered to students with disabilities in college (Gelbar,

Smith, & Reichow, 2014; Grogan, 2015). Moreover, additional

barriers, including (a) a lack of preparation for college in high

school (Francis, Duke, Brigham, & Demetro, 2018);

Francis et al.; Constant Fight

248

(b) limited student understanding of the nature of

their disability and needs (Anastopoulos & King,

2015); (c) executive functioning needs (Cai & Rich-

dale, 2016); (e) social and communication needs (Cai

& Richdale, 2016); (e) mental health needs (Anas-

topoulos & King, 2015; Cai & Richdale, 2016); (f)

challenges adjusting to change and unstructured envi-

ronments (Wenzel & Rowley, 2010); (g) student hes-

itancy to advocate or disclose their disability in order

to receive support (Burgstahler & Russon-Gleicher,

2015); and (h) college faculty uncertainty about how

to support the needs of students with disabilities (Bar-

nard-Brak et al., 2010; Dipeolu, Storlie, & Johnson,

2015; Odom & Wong, 2015) stymie the progress and

success of students with disabilities in college.

Research demonstrates college students with dis-

abilities reporting struggling with organization and

assignment management as well as time management

and setting a daily schedule (Van Hees et al., 2014).

Students have also reported feeling overwhelmed,

anxious, depressed, lonely, and tired and that they fre-

quently procrastinated on assignments because they

had no idea where to start (Sayman, 2015). As a result

of these experiences, Van Hees and colleagues (2014)

reported that students indicated that they would have

benefited from a transition coach who could monitor

and support their activities in choice making, study

skills, daily and vocational organization and skills,

clarifying ambiguities, and interacting socially and

could provide feedback on issues and advice.

Although research documents general barriers

experienced by college students with disabilities, lit-

tle is known about the in-depth perspectives of stu-

dents with disabilities in the U.S. For example, few

researchers have investigated the experiences of tran-

sitioning into college (Anderson & Butt, 2017) and

participants included in studies about college students

with disabilities are not representative of the diverse

population of students with disabilities attending col-

lege, including the number undergraduate and grad-

uate students, and students of varying genders, ages,

and disability types (Accardo, Kuder, & Woodruff,

2018; Anderson & Butt, 2017; Francis et al., 2018;

Kendall, 2016). Further, the limited body of research

that has studied the perceptions of college students

with disabilities does not report their perceptions of

family involvement (Francis et al., 2018) and lacks

in-depth qualitative analysis (Reed et al., 2015).

This lack of information hinders an understanding

of how to maximize positive college experiences and

outcomes for students with disabilities. Therefore,

the purpose of this study is to explore the perceptions

and experiences of college students with disabilities,

including their preparation for college. Three prima-

ry research questions guided this work: (a) How do

participants describe their preparation for college?

(b) How do participants describe their experiences

in college? and (c) What recommendations to partic-

ipants have to support the success of students with

disabilities in college?

Method

The principal investigators (i.e., two special edu-

cation faculty members) used convenience sampling

techniques (Maxwell, 2005) to recruit participants

for this study. The principal investigators recruited

participants through the distribution of a research-

er-developed online survey to college students with

disabilities registered with the disability service office

located at a large, public university in the mid-Atlan-

tic region of the U.S. (Francis et al., 2018). Survey

participants were overwhelmingly White/Caucasian

(67%), female (63%), spoke English as their first lan-

guage (93%), and reported their age between 18 and

24 years (70%). This survey included 33 questions

related to (a) basic demographic information, (b) the

degree to which they felt prepared to enter college,

of university services, (e) suggestions for improving

services, and (f) perceptions of family involvement

in college. The survey also offered an opportunity for

participants to provide contact information to partici-

pate in a follow-up interview about their experiences.

Of the 109 participants who agreed to participate in

the survey, 23 individuals provided their name and

preferred email address to engage in a follow-up

interview. One principal investigator attempted to

contact the 23 individuals a maximum of three times

over three weeks via email to schedule an interview.

During this time, one email bounced back as invalid,

13 individuals did not respond, one individual indi-

cated that they were no longer able to participate, and

eight individuals scheduled interviews.

Participants

According to the demographic questions com-

pleted by participants, over 60% of participants iden-

tified as female (n=5) and White/Caucasian (n=5).

All but one participant reported speaking English

in their home. Six of the eight participants lived off

campus with their families or in apartments located

near the university. Participant ages ranged from 18

to sixty years old and the number of years in college

ranged from undergraduate students (n=3) with less

than one year spent in college to graduate students

(n=5) with five or more years in college. Participants

self-reported primary disabilities (e.g., mental health,

(b) limited student understanding of the nature of their disability

and needs (Anastopoulos & King, 2015); (c) executive

functioning needs (Cai & Richdale, 2016); (e) social and

communication needs (Cai & Richdale, 2016); (e) mental health

needs (Anastopoulos & King, 2015; Cai & Richdale, 2016); (f)

challenges adjusting to change and unstructured environments

(Wenzel & Rowley, 2010); (g) student hesitancy to advocate or

disclose their disability in order to receive support (Burgstahler &

Russon-Gleicher, 2015); and (h) college faculty uncertainty

about how to support the needs of students with disabilities

(Barnard-Brak et al., 2010; Dipeolu, Storlie, & Johnson, 2015;

Odom & Wong, 2015) stymie the progress and success of

students with disabilities in college. Research demonstrates

college students with disabilities reporting struggling with

organization and assignment management as well as time

management and setting a daily schedule (Van Hees et al.,

2014). Students have also reported feeling overwhelmed,

anxious, depressed, lonely, and tired and that they frequently

procrastinated on assignments because they had no idea where

to start (Sayman, 2015). As a result of these experiences, Van

Hees and colleagues (2014) reported that students indicated that

they would have benefited from a transition coach who could

monitor and support their activities in choice making, study skills,

daily and vocational organization and skills, clarifying

ambiguities, and interacting socially and could provide feedback

on issues and advice. Although research documents general

barriers experienced by college students with disabilities, little is

known about the in-depth perspectives of students with

disabilities in the U.S. For example, few researchers have

investigated the experiences of transitioning into college

(Anderson & Butt, 2017) and participants included in studies

about college students with disabilities are not representative of

the diverse population of students with disabilities attending

college, including the number undergraduate and graduate

students, and students of varying genders, ages, and disability

types (Accardo, Kuder, & Woodruff, 2018; Anderson & Butt,

2017; Francis et al., 2018; Kendall, 2016). Further, the limited

body of research that has studied the perceptions of college

students with disabilities does not report their perceptions of

family involvement (Francis et al., 2018) and lacks in-depth

qualitative analysis (Reed et al., 2015). This lack of

information hinders an understanding of how to maximize

positive college experiences and outcomes for students with

disabilities. Therefore, the purpose of this study is to explore the

perceptions and experiences of college students with disabilities,

including their preparation for college. Three

primary research questions guided this work: (a) How do

participants describe their preparation for college? (b) How do

participants describe their experiences in college? and (c) What

recommendations to participants have to support the success of

students with disabilities in college?

The principal investigators (i.e., two special education faculty

members) used convenience sampling techniques (Maxwell,

2005) to recruit participants for this study. The principal

investigators recruited participants through the distribution of a

researcher-developed online survey to college students with

disabilities registered with the disability service office located at a

large, public university in the mid-Atlantic region of the U.S.

(Francis et al., 2018). Survey participants were overwhelmingly

White/Caucasian (67%), female (63%), spoke English as their

first language (93%), and reported their age between 18 and 24

years (70%). This survey included 33 questions related to (a)

basic demographic information, (b) the degree to which they felt

prepared to enter college, (c) services received at the university,

(d) perceptions of university services, (e) suggestions for

improving services, and (f) perceptions of family involvement in

college. The survey also offered an opportunity for participants to

provide contact information to participate in a follow-up interview

about their experiences. Of the 109 participants who agreed to

participate in the survey, 23 individuals provided their name and

preferred email address to engage in a follow-up interview. One

principal investigator attempted to contact the 23 individuals a

maximum of three times over three weeks via email to schedule

an interview. During this time, one email bounced back as

invalid, 13 individuals did not respond, one individual indicated

that they were no longer able to participate, and eight individuals

scheduled interviews.

According to the demographic questions completed by

participants, over 60% of participants identified as female (n=5)

and White/Caucasian (n=5). All but one participant reported

speaking English in their home. Six of the eight participants lived

off campus with their families or in apartments located near the

university. Participant ages ranged from 18 to sixty years old and

the number of years in college ranged from undergraduate

students (n=3) with less than one year spent in college to

graduate students (n=5) with five or more years in college.

Participants self-reported primary disabilities (e.g., mental health,

Journal of Postsecondary Education and Disability, 32(3)

249

specific learning disabilities, hearing impairment,

visual impairment) and primary support needs (e.g.,

self-management, academic, vocational support)

among participants reported varied. Table 1 displays

participant demographic information.

Data Collection

The principal investigators conducted one inter-

view in-person, four over the phone, and three via

Skype or Facetime, depending on participant pref-

erence and availability. The investigators conducted

interviews in a private room at the university with a

noise-canceling machine placed outside of the door to

protect participant privacy.

The principal investigator who facilitated inter-

views began by explaining the purpose of the study

and related risks and benefits and obtained written

informed consent, including participant permission

to record the interviews, prior to interviewing. One

investigator facilitated interviews, while the second

recorded field notes and asked follow-up questions,

as appropriate. All interviews were conducted in spo-

ken English, as no participants indicated needing ac-

commodations to participate. The investigators used a

semi-structured protocol (Merriam, 2009) developed

from previous research on the experiences of college

students with disabilities (Francis et al., 2018; Fran-

cis & Reed, 2019). The protocol included questions

related to (a) basic information about the participants

(e.g., “Can you tell us a little bit about yourself?”);

(b) experiences in high school (e.g., “Tell us about

your experiences in high school.” “What supports,

classes, or other experiences helped prepare you for

college?”); (c) experiences in college (e.g., “Talk

to us about when you started college.” “What sup-

ports have been the most or least helpful?”); and (d)

recommendations to facilitate student success (e.g.,

“Pretend we are going to teach professors and staff at

[University] how to support students with disabilities

in college. What should we teach them?” “Pretend

you’re in front of a group of new students. What ad-

vice do you have for students going to college for the

first time?”). If participants discussed their families

during interviews, we also asked probing questions

about the nature of family involvement and recom-

mendations for families to prepare individuals with

disabilities for college (e.g., “Pretend that we are

going to teach parents what to do when their children

go to college. What should we teach them?).

Data Analysis

A professional transcriptionist transcribed all in-

terviews. The principal investigators de-identified

transcripts and then collaborated with a research as-

sistant to read through all transcripts while listening to

the audio recordings to ensure transcription accuracy

(Creswell, 2009). The principal investigators assem-

bled an analysis team consisting of four individuals

(the two principal investigators and two graduate re-

search assistants) with expertise in disability, educa-

tion, support services, and higher education to begin

the analysis process. The analysis team began with

the principal investigators describing the purpose of

the study, IRB requirements, and open-coding proce-

dures to ensure a consistent conceptualization of the

process. Next, each team member independently read

and hand-coded a single transcript to determine key-

words and descriptive categories represented in the

data. The team then debriefed to identify similarities

and differences among the open codes and developed

an initial codebook based on this discussion. Using the

initial codebook as a guide, the team then hand-coded

another transcript and met again to discuss primary

and subthemes, identify unique or irrelevant topics,

and develop rich descriptions of themes. This process

resulted in a second version of the codebook. Finally,

the team used the same hand-coding and debriefing

process with another transcript, which resulted in a

third and finalized version of the codebook. The pri-

mary investigators used the finalized codebook and

NVivo qualitative software to perform basic interpre-

tative qualitative analysis of the data by recoding all

of the transcripts with the finalized codes (Merriam,

2009). The primary investigators also continued to

meet weekly until all data were analyzed to ensure

consistency of analysis procedures.

Trustworthiness

The analysis team employed numerous measures

to ensure the credibility of data analysis. First, the

principal investigators attempted to ensure trustwor-

thiness during interviews by encouraging partici-

pants to command the discussion through the use of

open-ended questions and prompts, recording inter-

views to gather precise information, and debriefing

and composing researcher memos immediately after

interviews (Wolcott, 1990). Second, the principal in-

vestigators used field notes to conduct informal mem-

ber checks throughout interviews by reviewing major

ideas and events with participants and inviting them

to correct or expand on information. They also con-

ducted more formal member checks with participants

at the end of each interview by reviewing key themes

and concepts. Third, the principal investigators com-

pared written transcripts to original interview record-

ings to ensure accuracy. Fourth, the analysis team

was comprised of four individuals with interests and

expertise in the nature of this research. The first prin-

specific learning disabilities, hearing impairment, visual

impairment) and primary support needs (e.g., self-management,

academic, vocational support) among participants reported

varied. Table 1 displays participant demographic information.

The principal investigators conducted one interview

in-person, four over the phone, and three via Skype or

Facetime, depending on participant preference and

availability. The investigators conducted interviews in a

private room at the university with a noise-canceling

machine placed outside of the door to protect participant

privacy. The principal investigator who facilitated

interviews began by explaining the purpose of the study

and related risks and benefits and obtained written

informed consent, including participant permission to

record the interviews, prior to interviewing. One

investigator facilitated interviews, while the second

recorded field notes and asked follow-up questions, as

appropriate. All interviews were conducted in spoken

English, as no participants indicated needing

accommodations to participate. The investigators used a

semi-structured protocol (Merriam, 2009) developed from

previous research on the experiences of college students

with disabilities (Francis et al., 2018; Francis & Reed,

2019). The protocol included questions related to (a)

basic information about the participants (e.g., “Can you

tell us a little bit about yourself?”); (b) experiences in high

school (e.g., “Tell us about your experiences in high

school.” “What supports, classes, or other experiences

helped prepare you for college?”); (c) experiences in

college (e.g., “Talk to us about when you started college.”

“What supports have been the most or least helpful?”);

and (d) recommendations to facilitate student success

(e.g., “Pretend we are going to teach professors and staff

at [University] how to support students with disabilities in

college. What should we teach them?” “Pretend you’re in

front of a group of new students. What advice do you

have for students going to college for the first time?”). If

participants discussed their families during interviews, we

also asked probing questions about the nature of family

involvement and recommendations for families to prepare

individuals with disabilities for college (e.g., “Pretend that

we are going to teach parents what to do when their

children go to college. What should we teach them?).

A professional transcriptionist transcribed all interviews.

The principal investigators de-identified transcripts and

then collaborated with a research

assistant to read through all transcripts while listening to the

audio recordings to ensure transcription accuracy (Creswell,

2009). The principal investigators assembled an analysis team

consisting of four individuals (the two principal investigators and

two graduate research assistants) with expertise in disability,

education, support services, and higher education to begin the

analysis process. The analysis team began with the principal

investigators describing the purpose of the study, IRB

requirements, and open-coding procedures to ensure a

consistent conceptualization of the process. Next, each team

member independently read and hand-coded a single transcript

to determine keywords and descriptive categories represented in

the data. The team then debriefed to identify similarities and

differences among the open codes and developed an initial

codebook based on this discussion. Using the initial codebook as

a guide, the team then hand-coded another transcript and met

again to discuss primary and subthemes, identify unique or

irrelevant topics, and develop rich descriptions of themes. This

process resulted in a second version of the codebook. Finally,

the team used the same hand-coding and debriefing process

with another transcript, which resulted in a third and finalized

version of the codebook. The primary investigators used the

finalized codebook and NVivo qualitative software to perform

basic interpretative qualitative analysis of the data by recoding all

of the transcripts with the finalized codes (Merriam, 2009). The

primary investigators also continued to meet weekly until all data

were analyzed to ensure consistency of analysis procedures.

The analysis team employed numerous measures to ensure the

credibility of data analysis. First, the principal investigators

attempted to ensure trustworthiness during interviews by

encouraging participants to command the discussion through the

use of open-ended questions and prompts, recording interviews

to gather precise information, and debriefing and composing

researcher memos immediately after interviews (Wolcott, 1990).

Second, the principal investigators used field notes to conduct

informal member checks throughout interviews by reviewing

major ideas and events with participants and inviting them to

correct or expand on information. They also conducted more

formal member checks with participants at the end of each

interview by reviewing key themes and concepts. Third, the

principal investigators compared written transcripts to original

interview recordings to ensure accuracy. Fourth, the analysis

team was comprised of four individuals with interests and

expertise in the nature of this research. The first

Francis et al.; Constant Fight

250

cipal investigator was a faculty member in the depart-

ment of special education, a former special education

teacher, an administrator for a college program for

individuals with disabilities, and a sibling of a broth-

er with disabilities. The second principal investigator

was a faculty member in the department of special

education, a former special education teacher, and

former special education advocate. The first graduate

research assistant was a mental health social worker

studying higher education policies and practices and

the second graduate research assistant was a former

high school administrator, special education teach-

er, and parent of an adolescent and young adult with

disabilities. These diverse experiences lend to the

trustworthiness of our analysis by providing our team

with a unique perspective that blends personal and

professional experiences. Fourth, the analysis team

met weekly to review and discuss interpretations of

data and consider researcher bias in the analysis (Pat-

ton, 2002).

Results

While discussing their experiences prior to and in

college, participants described feeling disempowered

(e.g., negative experiences; feeling unmotivated, disre-

spected, isolated, less worthy, unvalidated) or empow-

ered (e.g., positive experiences; feeling encouraged,

satisfied, proud, respected, accomplished). They also

reported information about the impact of their fami-

lies and provided recommendations for stakeholders to

better support individuals with disabilities.

Disempowerment

Five key interrelated subthemes emerged under

disempowerment: (a) discouragement, (b) debase-

ment, (c) insecurity, (d) isolation, and (e) repeated

cycles of disempowerment.

Discouragement. Discouragement emerged as a

key theme among all participants that resulted in them

feeling “disempowered.” Several participants such as

Nora, Lydia, and Rodney described how not receiving

a disability diagnosis until late in high school or in col-

lege resulted in them feeling discouraged throughout

their educational journey. As Nora noted:

They knew something was wrong but they…put

me into a regular 3rd grade class and then stuck

me in the back of the room and nobody helped

me. So probably some of my difficulties may

have come from a lack of proper education be-

cause I wasn't helped.

Shivani also described how an earlier diagnosis might

have prevented unnecessary distress through the pro-

vision of appropriate accommodations: “I wrote this

extra paper three or four times and I received the same

grade each time. It was awful. And there was no light

at the end of the tunnel. It was awful. I'd spend nights

writing essays and I'd still get B's and C's on them.”

Many participants also found educators who

lacked knowledge about disabilities or basic accom-

modations discouraging. For example, Landon indi-

cated that one of his high school teachers “basically

told me that I should learn my colors” when Landon

attempted to explain the impact of his colorblind-

ness. Rûna and Delmy, who both have hearing loss,

lamented when educators would “pop in a video”

without subtitles, “over-exaggerate” their speech,

or “turn their backs” while lecturing, which made

lip-reading impossible and difficult to gather mean-

ingful information during class. Nora also described

a discouraging experience when seeking help at the

writing center in college:

I was excited. Somebody that understands disabil-

ities and I'm going to go in there and show them

my work to get feedback on how I can process this

correctly and how I can get my thoughts out and

all that stuff…The only thing she did for me was

show me a web and I started crying because I was

like once again, I have been disappointed. How

can you advertise writing for disabilities and that

person not be somebody who specializes in that?

Other participants described accessing different types

of services (e.g., support groups, academic accom-

modations, audiobooks), but noted that these services

“just didn’t work” or even perpetuated “a counter-pro-

ductive negative cycle” of failure. This was especial-

ly true for participants with mental health needs. Tae

described the failure of high schools and universities

to provide adequate mental health support, especially

to students in crisis: “A lot of people they are feel-

ing on edge and then they don't get the psychological

support they need right away. They have to make an

appointment or whatever.” Tae also elaborated on the

negative impact of ineffective mental health services

in the community: “When you get admitted as an

in-patient in the hospital, they pretty much just over-

dose you with medications and send you off into the

real world.”

Participants indicated that a lack of faculty train-

ing and support staff offering services to students on a

one-size-fits-all basis as being particularly troubling.

For example, Nora lamented a “worthless” remedial

math course she took at a community college prior

principal investigator was a faculty member in the department of

special education, a former special education teacher, an

administrator for a college program for individuals with

disabilities, and a sibling of a brother with disabilities. The

second principal investigator was a faculty member in the

department of special education, a former special education

teacher, and former special education advocate. The first

graduate research assistant was a mental health social worker

studying higher education policies and practices and the second

graduate research assistant was a former high school

administrator, special education teacher, and parent of an

adolescent and young adult with disabilities. These diverse

experiences lend to the trustworthiness of our analysis by

providing our team with a unique perspective that blends

personal and professional experiences. Fourth, the analysis

team met weekly to review and discuss interpretations of data

and consider researcher bias in the analysis (Patton, 2002).

While discussing their experiences prior to and in college,

participants described feeling disempowered (e.g., negative

experiences; feeling unmotivated, disrespected, isolated, less

worthy, unvalidated) or empowered (e.g., positive experiences;

feeling encouraged, satisfied, proud, respected, accomplished).

They also reported information about the impact of their families

and provided recommendations for stakeholders to better

support individuals with disabilities.

Other participants described accessing different types of

services (e.g., support groups, academic accommodations,

audiobooks), but noted that these services “just didn’t work” or

even perpetuated “a counter-productive negative cycle” of

failure. This was especially true for participants with mental

health needs. Tae described the failure of high schools and

universities to provide adequate mental health support,

especially to students in crisis: “A lot of people they are feeling

on edge and then they don't get the psychological support they

need right away. They have to make an appointment or

whatever.” Tae also elaborated on the negative impact of

ineffective mental health services in the community: “When you

get admitted as an in-patient in the hospital, they pretty much

just overdose you with medications and send you off into the real

world.” Participants indicated that a lack of faculty training

and support staff offering services to students on a

one-size-fits-all basis as being particularly troubling. For

example, Nora lamented a “worthless” remedial math course she

took at a community college prior

Five key interrelated subthemes emerged under

disempowerment: (a) discouragement, (b) debasement, (c)

insecurity, (d) isolation, and (e) repeated cycles of

disempowerment. Discouragement. Discouragement

emerged as a key theme among all participants that resulted in

them feeling “disempowered.” Several participants such as Nora,

Lydia, and Rodney described how not receiving a disability

diagnosis until late in high school or in college resulted in them

feeling discouraged throughout their educational journey. As Nora

noted:

They knew something was wrong but they…put me into a

regular 3rd grade class and then stuck me in the back of the

room and nobody helped me. So probably some of my

difficulties may have come from a lack of proper education

because I wasn't helped.

Shivani also described how an earlier diagnosis might have

prevented unnecessary distress through the provision of

appropriate accommodations: “I wrote this extra paper three or

four times and I received the same grade each time. It was

awful. And there was no light at the end of the tunnel. It was

awful. I'd spend nights writing essays and I'd still get B's and C's

on them.” Many participants also found educators who

lacked knowledge about disabilities or basic accommodations

discouraging. For example, Landon indicated that one of his high

school teachers “basically told me that I should learn my colors”

when Landon attempted to explain the impact of his

colorblindness. Rûna and Delmy, who both have hearing loss,

lamented when educators would “pop in a video” without

subtitles, “over-exaggerate” their speech, or “turn their backs”

while lecturing, which made lip-reading impossible and difficult to

gather meaningful information during class. Nora also described

a discouraging experience when seeking help at the writing

center in college:

I was excited. Somebody that understands disabilities and

I'm going to go in there and show them my work to get

feedback on how I can process this correctly and how I can

get my thoughts out and all that stuff…The only thing she

did for me was show me a web and I started crying because

I was like once again, I have been disappointed. How can

you advertise writing for disabilities and that person not be

somebody who specializes in that?

Journal of Postsecondary Education and Disability, 32(3)

251

to attending her current university: “Once or twice a

week you went to class with the teacher sitting at the

front while you worked on the computer. But nobody

actually taught you anything.” Shivani described how

she “wanted to collapse” after finding out that a pro-

fessor did not allow peer support for homework: “I

got a couple of friends in that class and I wanted to

do my homework with them but then she was like

‘no collaboration.’ With disabilities, that's how you

learn-you can't do everything by yourself.” Further,

while she appreciated the remote captionist services

provided in college, Rûna indicated that this accom-

modation was not well-suited in graduate courses

because of the amount of group work. Rûna also

noted that some captionists or typists who supported

her in college were unfamiliar with course content,

which resulted in gross miscommunication and con-

fusion, such as when one typist typed “terrorists”

instead of “tariffs.”

Professionals lacking knowledge and ineffective

services and supports resulted in participants feeling

discouraged and unprepared to excel in school. Par-

ticipants felt unprepared when their disabilities were

“normalized too much” in high school or when they

were given assignments below what was expected for

their same-age peers. As Delmy put it:

In high school I wasn't really prepared for col-

lege…the amount of papers I had to write was

more than what I was used to because I'd never

had to write so many papers…The classes were

more advanced than what I was used to.

Rûna had a similar realization once she entered col-

lege: “Like I thought I was up here and actually I'm

down here and I need some assistance…For students

with disabilities…you think that you're on the same

playing field and that's not reality.” Several par-

ticipants, including Lydia, Delmy, Nora, and Rûna

also wished, as Lydia stated, they “had known the

processes and different benefits” they could have re-

ceived in high school and college. Participants felt

thrust into the “real world” after graduating high

school without a solid understanding of service el-

igibility, the cost of disability testing and assistive

technology, and opportunities for college scholar-

ships or other forms of support.

Debasement. Feeling debased and discredited

was another predominate theme that resulted in par-

ticipants feeling disempowered. Participants consis-

tently described educators “not believing” they had

disabilities, but rather maintaining that participants

were not “studying,” “trying hard enough,” or “paying

attention” in class. Nora recounted feeling “complet-

ly shocked” when attempting to secure accommoda-

tions with the disability service office in college:

When I first was diagnosed and I brought in my

paperwork to get accommodations, the first per-

son I met with in the disability office literally said

to me that she would never have diagnosed me

with disabilities. She said, “I would never have

diagnosed you with any disabilities. I think it's

just because it's been a while since you've been

in school.”

Other participants also found that, as Rûna said, “it

was very much like a student doesn't have a disabil-

ity until you prove you do” in college. For example,

Landon “had to basically show” a professor that he

was unable to visually discriminate between colors in

a chemistry lab before he was allowed to work with

a partner (despite this being listed as an accommoda-

tion on his disability service office form). Participants

described other instances of professors “refusing to

accommodate” their required accommodations such

providing PowerPoints, lecture notes, or extended

time because they did not believe participants re-

quired the accommodations or because they didn’t

“want people stealing” intellectual property included

in lecture notes. In general, participants believed that

the disability service office should have been “stand-

ing up” and “advocating” for them in these instances

of being discredited because “it’s their job” and “it’s

the law.”

Insecurity. Participants reported feeling “de-

pressed,” “inadequate,” and generally insecure when

comparing themselves to their peers without disabil-

ities. For example, as a child Rodney “noticed that a

lot of [his] classmates didn't have the same kind of

difficulty” he experienced with writing or that his

peers received higher scores on assignments, despite

him putting in “twice the effort.” Shivani speculated

that some of her insecurities stemmed from growing

up in an “Indian household” or within “the Asian

community” because, despite all of her academic ef-

forts and achievements, she was still considered “an

underachiever” compared to her family and friends

from similar cultural backgrounds. In the same vein,

participants reported feeling intimated and insecure

when transitioning to college for numerous reasons,

including taking courses with “over 70 or 80 stu-

dents,” asking professors for help, and coping with

enhanced expectations and challenging coursework.

Several participants, including Shivani, Tae, and

Nora purposefully selected majors based on their in-

securities or concerns related to their disabilities (e.g.,

“I would have stayed in elementary education….

to attending her current university: “Once or twice a week you

went to class with the teacher sitting at the front while you

worked on the computer. But nobody actually taught you

anything.” Shivani described how she “wanted to collapse” after

finding out that a professor did not allow peer support for

homework: “I got a couple of friends in that class and I wanted to

do my homework with them but then she was like ‘no

collaboration.’ With disabilities, that's how you learn-you can't do

everything by yourself.” Further, while she appreciated the

remote captionist services provided in college, Rûna indicated

that this accommodation was not well-suited in graduate courses

because of the amount of group work. Rûna also noted that

some captionists or typists who supported her in college were

unfamiliar with course content, which resulted in gross

miscommunication and confusion, such as when one typist typed

“terrorists” instead of “tariffs.” Professionals lacking

knowledge and ineffective services and supports resulted in

participants feeling discouraged and unprepared to excel in

school. Participants felt unprepared when their disabilities were

“normalized too much” in high school or when they were given

assignments below what was expected for their same-age peers.

As Delmy put it:

In high school I wasn't really prepared for college…the

amount of papers I had to write was more than what I was

used to because I'd never had to write so many

papers…The classes were more advanced than what I was

used to.

Rûna had a similar realization once she entered college: “Like I

thought I was up here and actually I'm down here and I need

some assistance…For students with disabilities…you think that

you're on the same playing field and that's not reality.” Several

participants, including Lydia, Delmy, Nora, and Rûna also

wished, as Lydia stated, they “had known the processes and

different benefits” they could have received in high school and

college. Participants felt thrust into the “real world” after

graduating high school without a solid understanding of service

eligibility, the cost of disability testing and assistive technology,

and opportunities for college scholarships or other forms of

support. Debasement. Feeling debased and discredited was

another predominate theme that resulted in participants feeling

disempowered. Participants consistently described educators

“not believing” they had disabilities, but rather maintaining that

participants were not “studying,” “trying hard enough,” or “paying

attention” in class. Nora recounted feeling

“completly shocked” when attempting to secure

accommodations with the disability service office in college:

When I first was diagnosed and I brought in my paperwork

to get accommodations, the first person I met with in the

disability office literally said to me that she would never have

diagnosed me with disabilities. She said, “I would never

have diagnosed you with any disabilities. I think it's just

because it's been a while since you've been in school.”

Other participants also found that, as Rûna said, “it was very

much like a student doesn't have a disability until you prove you

do” in college. For example, Landon “had to basically show” a

professor that he was unable to visually discriminate between

colors in a chemistry lab before he was allowed to work with a

partner (despite this being listed as an accommodation on his

disability service office form). Participants described other

instances of professors “refusing to accommodate” their required

accommodations such providing PowerPoints, lecture notes, or

extended time because they did not believe participants required

the accommodations or because they didn’t “want people

stealing” intellectual property included in lecture notes. In

general, participants believed that the disability service office

should have been “standing up” and “advocating” for them in

these instances of being discredited because “it’s their job” and

“it’s the law.” Insecurity. Participants reported feeling

“depressed,” “inadequate,” and generally insecure when

comparing themselves to their peers without disabilities. For

example, as a child Rodney “noticed that a lot of [his] classmates

didn't have the same kind of difficulty” he experienced with

writing or that his peers received higher scores on assignments,

despite him putting in “twice the effort.” Shivani speculated that

some of her insecurities stemmed from growing up in an “Indian

household” or within “the Asian community” because, despite all

of her academic efforts and achievements, she was still

considered “an underachiever” compared to her family and

friends from similar cultural backgrounds. In the same vein,

participants reported feeling intimated and insecure when

transitioning to college for numerous reasons, including taking

courses with “over 70 or 80 students,” asking professors for help,

and coping with enhanced expectations and challenging

coursework. Several participants, including Shivani, Tae, and

Nora purposefully selected majors based on their insecurities or

concerns related to their disabilities (e.g., “I would have stayed in

elementary education….

Francis et al.; Constant Fight

252

However, I didn’t feel that I was able to teach upper

grades, 4th, 5th, 6th, because of my disabilities…be-

cause I struggled.”).

Regrettably, participants also spoke about often

feeling embarrassed or ashamed when professionals

disclosed their disabilities without their consent (e.g.,

assigning participants to specific classes or spaces in

rooms, assigning participants to work with specific

workgroups, making fun of participant mistakes or

misunderstandings in front of others). Nora summa-

rized how many participants characterized the nega-

tive long-term influence of these experiences:

It's so much more intense because you already play

in your head the negatives…It's harder to move on.

I still play in my head the experiences as a child

and what I felt growing up. Little things that hap-

pened and even in my math [class]- the [professor]

rearranged the seats and put me next to students

that were really good in math. I just broke down

and cried because I literally was that 3rd grader all

over again, put in the back of the room.

Isolation. Feeling isolated emerged as another

factor contributing to disempowerment. Part of the

isolation experience for participants was related to

reconciling what it meant to have a disability and how

disability influenced their identity. Some participants,

such as Tae, felt uncertainty and confusion once they

were diagnosed (e.g., “I didn't really understand it at the

time”), while others such as Rûna recalled “very vivid

memories” of being diagnosed: “My mom is sobbing.

And I am asking, ‘Am I dying?’ And instead I get these

purple hearing aids.” In high school Rûna also became

even more concerned about the nature of her disability:

All of the students that had hearing aids...most of

them were mentally retarded. So then it's kind of

like wait - so am I like THEM? And you're kind

of scared to ask questions and I didn't know if this

was like by being hearing impaired it could lead

to something else.

Delmy had a similar experience when she was re-

evaluated and diagnosed with autism in addition to a

hearing impairment in college:

I will say I broke down because I was very upset

and I didn't know why they were telling me when

I was already in my 20's and I'm just like why is

this happening now? And I have a brother who's

Autistic. He's two years younger than me and he

can't speak for himself. And when they told me

that I was thinking am I just like him?

Feeling disconnected or isolated from family as a re-

sult of their disability also influenced participant iso-

lation. Rûna described feeling like a “burden” on her

family because “they look so depressed and so sad…

they feel bad for their child. They still carry this stig-

ma” of disability:

My parents are still very much learning all about

what America is. And to them having a child

who's disabled from their frame of understanding

is God's punishing us. We did something wrong-

any person with disabilities, in most of the Mid-

dle East, they keep their child home. Whether

you're Blind, you're Deaf, you're Autistic - they

just - hidden is kind of the way they go.

Shivani shared similar experiences about her family:

“My mom - even when I started to ask for help, she

had this negative stigmatism like you're not crazy!

You don't have any problems!” Tae also described

how “the Asian gender/race thing” left his family “re-

ally shocked” when he was diagnosed with bipolar.

Rûna not only felt isolated from her family based

on their strong reaction to her diagnosis, but also be-

cause she was “mainstreamed” in school: “No one in

my elementary school had hearing aids or was Deaf

or hard-of-hearing. Middle school: no one.” In fact,

Rûna mentioned that “I didn't meet another hearing

impaired 20-something until I was 21, so I have been

completely out of any community or network of peo-

ple who have a similar disability to myself.” This

resulted in Rûna feeling isolated from the hearing

community because she’s “different” and also unsure

if she “would be accepted in the Deaf and hard-of-

hearing community.”

Repeated cycles of disempowerment. Par-

ticipants used numerous terms and phrases when

describing “the cycle” of “disempowerment” that

emphasized the ongoing and cyclical nature of their

experiences (e.g., “It's just kind of like one wall after

another and it's never ending.” “If I didn't advocate

for myself and allowed once again to be disempow-

ered.” “It's a constant fight. And it always happens.

Even today. It happens all the time.”). Multiple fac-

tors contributed to the continued cycle of disempow-

erment, including those previously discussed in this

section. For example, cultural stigma and discrimi-

nation perpetuated cycles of disempowerment. In

particular, Rûna, Shivani, and Tae described the ways

in which disability is stigmatized in Middle Eastern

and Asian cultures. These participants described how

friends and families in their community “don’t talk

about” disabilities or felt “scared” about disabilities.

On another note, Rûna described how her college

….However, I didn’t feel that I was able to teach upper grades,

4th, 5th, 6th, because of my disabilities…because I struggled.”).

Regrettably, participants also spoke about often feeling

embarrassed or ashamed when professionals disclosed their

disabilities without their consent (e.g., assigning participants to

specific classes or spaces in rooms, assigning participants to

work with specific workgroups, making fun of participant

mistakes or misunderstandings in front of others). Nora

summarized how many participants characterized the negative

long-term influence of these experiences:

It's so much more intense because you already play in your

head the negatives…It's harder to move on. I still play in my

head the experiences as a child and what I felt growing up.

Little things that happened and even in my math [class]- the

[professor] rearranged the seats and put me next to

students that were really good in math. I just broke down

and cried because I literally was that 3rd grader all over

again, put in the back of the room.

Isolation. Feeling isolated emerged as another factor

contributing to disempowerment. Part of the isolation experience

for participants was related to reconciling what it meant to have

a disability and how disability influenced their identity. Some

participants, such as Tae, felt uncertainty and confusion once

they were diagnosed (e.g., “I didn't really understand it at the

time”), while others such as Rûna recalled “very vivid memories”

of being diagnosed: “My mom is sobbing. And I am asking, ‘Am I

dying?’ And instead I get these purple hearing aids.” In high

school Rûna also became even more concerned about the

nature of her disability:

All of the students that had hearing aids...most of them were

mentally retarded. So then it's kind of like wait - so am I like

THEM? And you're kind of scared to ask questions and I

didn't know if this was like by being hearing impaired it could

lead to something else.

Delmy had a similar experience when she was

reevaluated and diagnosed with autism in addition to a

hearing impairment in college:

I will say I broke down because I was very upset and I didn't

know why they were telling me when I was already in my

20's and I'm just like why is this happening now? And I have

a brother who's Autistic. He's two years younger than me

and he can't speak for himself. And when they told me that I

was thinking am I just like him?

Feeling disconnected or isolated from family as a result of their

disability also influenced participant isolation. Rûna described

feeling like a “burden” on her family because “they look so

depressed and so sad…they feel bad for their child. They still

carry this stigma” of disability:

My parents are still very much learning all about what

America is. And to them having a child who's disabled from

their frame of understanding is God's punishing us. We did

something wrong- any person with disabilities, in most of the

Middle East, they keep their child home. Whether you're

Blind, you're Deaf, you're Autistic - they just - hidden is kind

of the way they go.

Shivani shared similar experiences about her family: “My mom -

even when I started to ask for help, she had this negative

stigmatism like you're not crazy! You don't have any problems!”

Tae also described how “the Asian gender/race thing” left his

family “really shocked” when he was diagnosed with bipolar.

Rûna not only felt isolated from her family based on their

strong reaction to her diagnosis, but also because she was

“mainstreamed” in school: “No one in my elementary school had

hearing aids or was Deaf or hard-of-hearing. Middle school: no

one.” In fact, Rûna mentioned that “I didn't meet another hearing

impaired 20-something until I was 21, so I have been completely

out of any community or network of people who have a similar

disability to myself.” This resulted in Rûna feeling isolated from

the hearing community because she’s “different” and also unsure

if she “would be accepted in the Deaf and hard-of-hearing

community.” Repeated cycles of disempowerment.

Participants used numerous terms and phrases when describing

“the cycle” of “disempowerment” that emphasized the ongoing

and cyclical nature of their experiences (e.g., “It's just kind of like

one wall after another and it's never ending.” “If I didn't advocate

for myself and allowed once again to be disempowered.” “It's a

constant fight. And it always happens. Even today. It happens all

the time.”). Multiple factors contributed to the continued cycle of

disempowerment, including those previously discussed in this

section. For example, cultural stigma and discrimination

perpetuated cycles of disempowerment. In particular, Rûna,

Shivani, and Tae described the ways in which disability is

stigmatized in Middle Eastern and Asian cultures. These

participants described how friends and families in their

community “don’t talk about” disabilities or felt “scared” about

disabilities. On another note, Rûna described how her college

Journal of Postsecondary Education and Disability, 32(3)

253

peers assumed she was a “spoiled, absorbed, student

from some rich country [who] hired people to come

takes notes for me” based on her ethnicity when they

saw the disability service office-appointed captionist

supporting her in class.

Participants, especially Nora, also talked about

the disempowering impact of observing and experi-

encing low expectations of other students in schools.

As a substitute teacher in an elementary school, Nora

recalled several examples of educators talking neg-

atively about children (e.g., “I can't believe she is

so [academically] low”) right “in front” of students.

She also observed educators purposefully humiliat-

ing students with disabilities in class by using nega-

tive body language (e.g., ignoring student questions,

turning their backs on students), physically isolating

students in classrooms, and asking students to answer

complicated questions in front of their peers. Observ-

ing these acts of humiliation and low expectations in

schools activated strong feelings of disempowerment

based on her own negative experiences in school: “it

doesn't matter how old you are. We still want to feel

safe [in schools].”

Finally, participants portrayed stigma and dis-

crimination in the workplace as perpetuating disem-

powerment. Participants described various examples

of discrimination on the job, including having “dis-

abilities you can’t see,” human resources “protecting

institutions, not people” in instances of discrimina-

tion, and supervisors accusing individuals with dis-

abilities of being “lazy,” “not trying hard enough,

or being “too social.” Other forms of discrimination

related to age, gender, and race/ethnicity were dis-

cussed by several participants, including Rûna:

You're a young person, female, minority, and a

disability, right?... For a lot of job apps I don't

want to say that I'm disabled. That's going to hurt

me. Or is it going to help me? Do they have to

have a quota?

Rûna also lamented the “bystander” effect of co-

workers allowing discrimination to occur and the also

consequences of “speaking up” and being “whistle

blower” who reports acts of discrimination.

Empowerment

Participants also described instances in which

they felt empowered and successful. Five key inter-

related subthemes emerged under empowerment: (a)

diagnosis, (b) effective supports, (c) family support,

(d) resilience, and (e) advocacy.

Diagnosis. Although participants sometimes

found their disability challenging, instances of

self-awareness, understanding, and acceptance after

receiving a diagnosis or understanding their dis-

ability also permeated interviews as a means of em-

powerment. Several participants, including Delmy

described “starting to understand” themselves better

after receiving a disability diagnosis: “Now I can tell

people that I do have [autism]. This is me.” Similarly,

Nora described feeling validated after receiving a di-

agnosis: “I cried because I was like, I'm not stupid!”

Participants also described becoming better self-ad-

vocates as they became “more comfortable” with

their “disability” and “realized” that they are “more

capable” than they once believed. Better understand-

ing the nature of their disability also enabled partici-

pants to “do research” on effective strategies, as well

as deeply reflect on ways in which they “survived”

in the past. As Nora noted, “When I got diagnosed at

first I didn't really talk about it. But then I don't know,

I felt like I'm not ashamed of it. I'm not ashamed of

my disabilities and I'm not afraid to tell people.”

Effective supports. Just as ineffective supports

and services resulted in disempowerment, partic-

ipants felt empowered once they received effective

and appropriate supports at school (e.g., extended

time for texts and assignments, quiet testing centers,

breaks during class, captionists). Delmy, Rodney,

and Tae specified how attending community college

helped them prepare for a four-year university by in-

troducing them to services they did not receive in high

school and by providing valuable mentoring support

(e.g., explaining the differences between high school

and college, suggesting which courses to take, pro-

posing self-regulation and organization strategies).

Other supports such as priority registration and

more individualized academic or mental health ser-

vices (e.g., take-home tests, posting recorded lec-

tures and course materials online, “therapy once a

week”) also empowered participants once they en-

tered the four-year university where this study took

place. Both Shivani and Nora described how helpful

it was when educators provided “genuine support”

by taking time to “point out patterns” of mistakes

and “make a conscious effort” to help them learn

how to correct mistakes.

Interestingly, although participants found specif-

ic services and accommodations empowering, they

determined that educators “who went beyond the ac-

commodations,” and were “caring,” “warm,” “fun,”

and “understanding” provided even greater degrees

of support and long-term empowerment. Examples

of these impactful educators included Lydia’s experi-

ences with her “supportive” and “nice” Latin teacher

in high school with whom she often ate lunch. Shivani

also noted the importance of “lov[ing] teachers who

peers assumed she was a “spoiled, absorbed, student from

some rich country [who] hired people to come takes notes for

me” based on her ethnicity when they saw the disability service

office-appointed captionist supporting her in class.

Participants, especially Nora, also talked about the

disempowering impact of observing and experiencing low

expectations of other students in schools. As a substitute teacher

in an elementary school, Nora recalled several examples of

educators talking negatively about children (e.g., “I can't believe

she is so [academically] low”) right “in front” of students. She

also observed educators purposefully humiliating students with

disabilities in class by using negative body language (e.g.,

ignoring student questions, turning their backs on students),

physically isolating students in classrooms, and asking students

to answer complicated questions in front of their peers.

Observing these acts of humiliation and low expectations in

schools activated strong feelings of disempowerment based on

her own negative experiences in school: “it doesn't matter how

old you are. We still want to feel safe [in schools].” Finally,

participants portrayed stigma and discrimination in the workplace

as perpetuating disempowerment. Participants described various

examples of discrimination on the job, including having

“disabilities you can’t see,” human resources “protecting

institutions, not people” in instances of discrimination, and

supervisors accusing individuals with disabilities of being “lazy,”

“not trying hard enough, or being “too social.” Other forms of

discrimination related to age, gender, and race/ethnicity were

discussed by several participants, including Rûna:

You're a young person, female, minority, and a disability,

right?... For a lot of job apps I don't want to say that I'm

disabled. That's going to hurt me. Or is it going to help me?

Do they have to have a quota?

Rûna also lamented the “bystander” effect of coworkers allowing

discrimination to occur and the also consequences of “speaking up” and being

“whistle blower” who reports acts of discrimination.

Participants also described instances in which they felt

empowered and successful. Five key interrelated

subthemes emerged under empowerment: (a) diagnosis,

(b) effective supports, (c) family support, (d) resilience,

and (e) advocacy. Diagnosis. Although participants

sometimes found their disability challenging, instances of

of self-awareness, understanding, and acceptance after receiving

a diagnosis or understanding their disability also permeated

interviews as a means of empowerment. Several participants,

including Delmy described “starting to understand” themselves

better after receiving a disability diagnosis: “Now I can tell people

that I do have [autism]. This is me.” Similarly, Nora described

feeling validated after receiving a diagnosis: “I cried because I

was like, I'm not stupid!” Participants also described becoming

better self-advocates as they became “more comfortable” with

their “disability” and “realized” that they are “more capable” than

they once believed. Better understanding the nature of their

disability also enabled participants to “do research” on effective

strategies, as well as deeply reflect on ways in which they

“survived” in the past. As Nora noted, “When I got diagnosed at

first I didn't really talk about it. But then I don't know, I felt like I'm

not ashamed of it. I'm not ashamed of my disabilities and I'm not

afraid to tell people.” Effective supports. Just as ineffective

supports and services resulted in disempowerment, participants

felt empowered once they received effective and appropriate

supports at school (e.g., extended time for texts and

assignments, quiet testing centers, breaks during class,

captionists). Delmy, Rodney, and Tae specified how attending

community college helped them prepare for a four-year university

by introducing them to services they did not receive in high

school and by providing valuable mentoring support (e.g.,

explaining the differences between high school and college,

suggesting which courses to take, proposing self-regulation and

organization strategies). Other supports such as priority

registration and more individualized academic or mental health

services (e.g., take-home tests, posting recorded lectures and

course materials online, “therapy once a week”) also empowered

participants once they entered the four-year university where this

study took place. Both Shivani and Nora described how helpful it

was when educators provided “genuine support” by taking time to

“point out patterns” of mistakes and “make a conscious effort” to

help them learn how to correct mistakes. Interestingly,

although participants found specific services and

accommodations empowering, they determined that educators

“who went beyond the accommodations,” and were “caring,”

“warm,” “fun,” and “understanding” provided even greater

degrees of support and long-term empowerment. Examples of

these impactful educators included Lydia’s experiences with her

“supportive” and “nice” Latin teacher in high school with whom

she often ate lunch. Shivani also noted the importance of

“lov[ing] teachers who

Francis et al.; Constant Fight

254

actually try to have a relationship with the student”

or “at least acknowledge” when students are trying.

Similarly, Nora highlighted the influence of educa-

tors who told her she was “capable” and “pushed her”

to reach goals and achieve milestones.

Family support. Participants reported family

members (e.g., parents, grandparents, spouses, sib-

lings, children) providing various forms of finan-

cial, academic, and emotional support. For example,

Shivani indicated that her family “has my back” and

Tae said that his family helps him “get through the

day.” Other participants such as Rodney described

how his spouse encouraged him to “get off [his] ass”

and pursue higher education and Nora’s daughters

insisted that it would be “empowering” for her to

“speak up [and] take back her power” and advocate

for herself and other students with disabilities at the

university and her workplace. Participants’ families

also supported their “dream of going to college” by

providing tutoring support, “pushing” them to do

their best, and helping them with assignments. In ad-

dition, family members provided participants infor-

mation about disability services at college (e.g., “the

disability center-my mom found out about it. I had

no idea it existed”) and served as a “career adviser.”

Finally, Shivani explained how her father helped her

“set boundaries” with her other family members in

order to reduce the amount of “control” they main-

tained over her life (e.g., “If I want to go to a friend's

- if I want to go to the mall with friends, [mom’s] like

who, what, when, where, why, how? Are your friends

driving? No. Let me drive you.”).

Resilience. Participants reported numerous re-

silience strategies, or strategies used to recover from

frustrating or wearisome experiences, that made them

feel “stronger” as a result of working through trying

experiences. One example included associating with

“cultural clubs” or other “groups of people to hang

out with” to provide moral, social, and emotion-

al support. Participants also recalled “coping” with

stigma or other disability-related challenges by “re-

searching” and trying out different approaches to sup-

port their needs, using assistive technology or other

“mechanisms” as forms of support, asking for help

from peers, and “making a few people laugh… in the

meantime.”

Advocacy. Participants described many ways in

which they advocated for themselves. For example,

participants “took the initiative to go” to professors

and describe their needs and accommodations, in-

cluding attempting “to break down” how they learn

and process information for professors, because, as

Rûna noted, “I know if I don't advocate for myself no-

body else will. That's the reality, right?” Participants

also described coming prepared with their disability

service office-issued accommodations form and other

“proof” of their disabilities. Rûna described how she

explained her hearing loss and needed accommoda-

tions: “I have my audiology exam on my desktop. So

I explain it to [professors]–like all of this I can't hear.

With the hearing aid it helps this much.” Participants

also found it helpful to describe the consequences of

not receiving appropriate accommodations when ad-

vocating for themselves such as missing or misinter-

preting vital information on the job or in class.

In addition, participants described empowering

instances of advocating for others. For example,

when asked why they decided to participate in this

study, all participants indicated that they wanted to

help other students learn about resources and sup-

ports, just like they needed when they were “starting

out” in college. Participants described ways in which

they advocated for the disability community, such

as “let[ting] people try on hearing aids because they

just don't know…that hearing aids don't give hear-

ing, they just amplify everything” or discussing how

to appropriately interact with or support individuals

with disabilities among their peers and coworkers.

Recommendations

Participants made recommendations for (a) edu-

cation systems, (b) professionals, (c) families, and (d)

students with disabilities.

Education system recommendations. Partici-

pants called for education reform that more effectively

prepares students with disabilities for “real life,” in-

cluding more thoughtful considerations for inclusion

and information and resource sharing. Despite feel-

ing isolated from being “mainstreaming” throughout

her educational career, Rûna discussed the challenges

and importance of thoughtfully considering inclu-

sion: “Apparently now [County] sends all hearing

impaired students to one specialized school. Which

I think THAT is not the right way either. It shouldn't

be two polar extremes, right?” Many participants

also suggested that secondary schools take more sys-

tematic steps to better inform immigrant families of

available resources within and outside of the school

system to help students “prepare better” for college.

Although participants acknowledged an increas-

ing acceptance of depression and other mental health

needs in society, they expressed a need for education

systems to consider “social/emotional” development

as “the #1 focus” in school systems to maximize

success in school and after graduation. Participants

suggested that needed supports and services, espe-

cially those related to social and emotional support

be available to all students, including those with “un-

actually try to have a relationship with the student” or “at least

acknowledge” when students are trying. Similarly, Nora

highlighted the influence of educators who told her she was

“capable” and “pushed her” to reach goals and achieve

milestones. Family support. Participants reported family

members (e.g., parents, grandparents, spouses, siblings,

children) providing various forms of financial, academic, and

emotional support. For example, Shivani indicated that her

family “has my back” and Tae said that his family helps him “get

through the day.” Other participants such as Rodney described

how his spouse encouraged him to “get off [his] ass” and pursue

higher education and Nora’s daughters insisted that it would be

“empowering” for her to “speak up [and] take back her power”

and advocate for herself and other students with disabilities at

the university and her workplace. Participants’ families also

supported their “dream of going to college” by providing tutoring

support, “pushing” them to do their best, and helping them with

assignments. In addition, family members provided participants

information about disability services at college (e.g., “the

disability center-my mom found out about it. I had no idea it

existed”) and served as a “career adviser.” Finally, Shivani

explained how her father helped her “set boundaries” with her

other family members in order to reduce the amount of “control”

they maintained over her life (e.g., “If I want to go to a friend's - if

I want to go to the mall with friends, [mom’s] like who, what,

when, where, why, how? Are your friends driving? No. Let me

drive you.”). Resilience. Participants reported numerous

resilience strategies, or strategies used to recover from

frustrating or wearisome experiences, that made them feel

“stronger” as a result of working through trying experiences. One

example included associating with “cultural clubs” or other

“groups of people to hang out with” to provide moral, social, and

emotional support. Participants also recalled “coping” with

stigma or other disability-related challenges by “researching” and

trying out different approaches to support their needs, using

assistive technology or other “mechanisms” as forms of support,

asking for help from peers, and “making a few people laugh… in

the meantime.” Advocacy. Participants described many

ways in which they advocated for themselves. For example,

participants “took the initiative to go” to professors and describe

their needs and accommodations, including attempting “to break

down” how they learn and process information for professors,

because, as Rûna noted, “I know if I don't advocate for myself

nobody else will. That's the reality, right?”

Participants also described coming prepared with their disability

service office-issued accommodations form and other “proof” of

their disabilities. Rûna described how she explained her hearing

loss and needed accommodations: “I have my audiology exam

on my desktop. So I explain it to [professors]–like all of this I can't

hear. With the hearing aid it helps this much.” Participants also

found it helpful to describe the consequences of not receiving

appropriate accommodations when advocating for themselves

such as missing or misinterpreting vital information on the job or

in class. In addition, participants described empowering

instances of advocating for others. For example, when asked

why they decided to participate in this study, all participants

indicated that they wanted to help other students learn about

resources and supports, just like they needed when they were

“starting out” in college. Participants described ways in which

they advocated for the disability community, such as “let[ting]

people try on hearing aids because they just don't know…that

hearing aids don't give hearing, they just amplify everything” or

discussing how to appropriately interact with or support

individuals with disabilities among their peers and coworkers.

Participants made recommendations for (a) education systems,

(b) professionals, (c) families, and (d) students with disabilities.

Education system recommendations. Participants called for

education reform that more effectively prepares students with

disabilities for “real life,” including more thoughtful considerations

for inclusion and information and resource sharing. Despite

feeling isolated from being “mainstreaming” throughout her

educational career, Rûna discussed the challenges and

importance of thoughtfully considering inclusion: “Apparently now

[County] sends all hearing impaired students to one specialized

school. Which I think THAT is not the right way either. It shouldn't

be two polar extremes, right?” Many participants also suggested

that secondary schools take more systematic steps to better

inform immigrant families of available resources within and

outside of the school system to help students “prepare better” for

college. Although participants acknowledged an increasing

acceptance of depression and other mental health needs in

society, they expressed a need for education systems to consider

“social/emotional” development as “the #1 focus” in school

systems to maximize success in school and after graduation.

Participants suggested that needed supports and services,

especially those related to social and emotional support be

available to all students, including those with

Journal of Postsecondary Education and Disability, 32(3)

255

diagnosed mental health issues.” However, partici-

pants also noted that school professionals are often at

“max capacity” and need decreased “caseload” sizes

and ongoing “specialized” training in providing in-

dividualized supports. Participants called for “more

education of teachers throughout elementary school

through high school” about “what disabilities exist,”

how to help recognize disabilities, what accommo-

dations, modifications, and assistive technology exist

to support students, and how to “better understand

the different neurological differences between people

with learning disabilities and mental illnesses.” Par-

ticipants noted that this type of training would help

teachers better support all students, thus preventing

students having “to fail something before [getting]

recommended” for disability services.

In college, Shivani recommended that there

should “two seminars: one for parents and one for

kids so that the kids learn that they need to be inde-

pendent and make sure that they have the resources

available and tell the same thing to the parents but in a

different seminar.” Multiple participants also recom-

mended that colleges create more robust peer support

groups or “platforms” “for those who are open about

their disability to have other students reach out to

them.” Some participants indicated that this would be

helpful for social and academic support, while others

suggested that they would like a peer group of other

people who have disabilities with whom they can

“relate” to turn to for emotional support, especially

during “stressful” times. Shivani also recommended

the creation of groups of “alumni” college students

with disabilities to “create communication with [new

college students with disabilities] because they've

been through it.”

Professional recommendations. First and fore-

most, participants recommended that professionals

“really stress the importance of respect for children

in the school system” by making students “feel

safe,” “validating” students, “standing by the side”

of students with disabilities, and showing them “that

you understand.” Nora also suggested that univer-

sity faculty in departments of education should

emphasize to pre-service teachers that “you [will]

always have a student that may not be diagnosed but

has some difficulties” and “prepare future teachers”

to support all students.

Relatedly, participants provided recommenda-

tions for ways in which professionals can better sup-

port students with disabilities. Nora suggested that

college professors “look at your students and say,

‘Even if you don't have disabilities you can come talk

to me if you need help. I will help. That's what I am

here for. I will help you.’” She also stressed the “im-

portance of professors reading the disability portion

of the syllabus:”

When professors go over the syllabus and come

to the disabilities section and say, "You can read

that..." or pass by it, it discredits those with dis-

abilities. It sends a message that they are not

important, the typical learners are more import-

ant…. It continues the stigma and view of those

with disabilities that they are less than, ignored,

or not a priority.

Other participants recommended that educators pro-

vide necessary and officially required academic ac-

commodations while also facilitating peer-to-peer

support and addressing depression “early on,” before

students find themselves in crisis.

Another form of professional support frequently

recommended by participants was to share informa-

tion and strategies with students and their families.

Examples of information participants wished they

would have known included how to “get resources”

in school or at work, how to “advocate” for them-

selves, information about “government benefits,” and

how to become “more responsible and independent.”

Nora and Rûna also recommended that education-

al professionals in high school and college prepare

students with disabilities for discrimination that they

may experience in the workplace after graduation.

Rûna stated:

What do you do when you're being discriminat-

ed against?... So all of a sudden you're like well,

can't change it I'm disabled. Can't change it that

I have an asshole as a boss. So what do you do?

These are preparations that at the high school and

undergrad [levels] are not addressed.

These participants recommended that professionals

“arm” students “to be comfortable enough to speak

up for themselves” and “know the lived reality that

you might be kicked” because “at the end of the day,”

places of employment do not adhere to the “fluffy

diversity policy on the [company] website.” Rûna

and Nora both recommended high school educators

and disability service office staff in college not only

explain rights afforded under the Americans with

Disabilities Act, but also what constitutes as a “rea-

sonable accommodation” and advice on whether or

not they should disclose their disabilities, and if so,

how and when.

Family recommendations. Participants made

basic recommendations for families of college stu-

dents with disabilities, including destigmatizing

with “undiagnosed mental health issues.” However, participants

also noted that school professionals are often at “max capacity”

and need decreased “caseload” sizes and ongoing “specialized”

training in providing individualized supports. Participants called

for “more education of teachers throughout elementary school

through high school” about “what disabilities exist,” how to help

recognize disabilities, what accommodations, modifications, and

assistive technology exist to support students, and how to “better

understand the different neurological differences between people

with learning disabilities and mental illnesses.” Participants noted

that this type of training would help teachers better support all

students, thus preventing students having “to fail something

before [getting] recommended” for disability services. In

college, Shivani recommended that there should “two seminars:

one for parents and one for kids so that the kids learn that they

need to be independent and make sure that they have the

resources available and tell the same thing to the parents but in

a different seminar.” Multiple participants also recommended that

colleges create more robust peer support groups or “platforms”

“for those who are open about their disability to have other

students reach out to them.” Some participants indicated that this

would be helpful for social and academic support, while others

suggested that they would like a peer group of other people who

have disabilities with whom they can “relate” to turn to for

emotional support, especially during “stressful” times. Shivani

also recommended the creation of groups of “alumni” college

students with disabilities to “create communication with [new

college students with disabilities] because they've been through

it.” Professional recommendations. First and foremost,

participants recommended that professionals “really stress the

importance of respect for children in the school system” by

making students “feel safe,” “validating” students, “standing by

the side” of students with disabilities, and showing them “that you

understand.” Nora also suggested that university faculty in

departments of education should emphasize to pre-service

teachers that “you [will] always have a student that may not be

diagnosed but has some difficulties” and “prepare future

teachers” to support all students. Relatedly, participants

provided recommendations for ways in which professionals can

better support students with disabilities. Nora suggested that

college professors “look at your students and say, ‘Even if you

don't have disabilities you can come talk to me if you need help. I

will help. That's what I am here for. I will help you.’” She also

stressed the

“importance of professors reading the disability portion

of the syllabus:”

When professors go over the syllabus and come to the disabilities section and say, "You

can read that..." or pass by it, it discredits those with disabilities. It sends a message that

they are not important, the typical learners are more important…. It continues the stigma

and view of those with disabilities that they are less than, ignored, or not a priority.

Other participants recommended that educators provide

necessary and officially required academic accommodations

while also facilitating peer-to-peer support and addressing

depression “early on,” before students find themselves in crisis.

Another form of professional support frequently

recommended by participants was to share information and

strategies with students and their families. Examples of

information participants wished they would have known included

how to “get resources” in school or at work, how to “advocate” for

themselves, information about “government benefits,” and how to

become “more responsible and independent.” Nora and Rûna

also recommended that educational professionals in high school

and college prepare students with disabilities for discrimination

that they may experience in the workplace after graduation.

Rûna stated:

What do you do when you're being discriminated against?...

So all of a sudden you're like well, can't change it I'm

disabled. Can't change it that I have an asshole as a boss.

So what do you do? These are preparations that at the high

school and undergrad [levels] are not addressed.

These participants recommended that professionals

“arm” students “to be comfortable enough to speak up

for themselves” and “know the lived reality that you

might be kicked” because “at the end of the day,”

places of employment do not adhere to the “fluffy

diversity policy on the [company] website.” Rûna and

Nora both recommended high school educators and

disability service office staff in college not only explain

rights afforded under the Americans with Disabilities

Act, but also what constitutes as a “reasonable

accommodation” and advice on whether or not they

should disclose their disabilities, and if so, how and

when. Family recommendations. Participants made

basic recommendations for families of college students

with disabilities, including destigmatizing

Francis et al.; Constant Fight

256

disability within the family unit by talking about

disabilities, setting high expectations, and openly

discussing student needs, strengths, strategies, and re-

sources. In general, participants wished their parents

were more “hands-on” to help them locate available

services and supports following high school. Delmy

suggested that families visit college campuses with

their students to “see what [colleges] offer for disabil-

ity services so they can find the best way to help their

child that's going into college.” However, participants

also recommended that “helicopter parents…who do

everything for their kid” do their child a “disservice”

by not teaching them to develop “responsibility” and

“their own tool kit to survive” more independently

into adulthood.

Student recommendations. Participants primar-

ily recommended that college students with disabil-

ities “always advocate” for themselves and “not be

afraid” to ask for help in college because “nobody is

going to do it for you.” Participants suggested that

other students “be themselves,” “don't shy away from

your disability,” “be self-aware [if they are] feeling

anxious or depressed,” and “contact the disability

office…to see what resources they provide.” Partic-

ipants also recommended that students learn “take

care of yourself” without the support of their parents,

as Shivani noted: “It hit me that I was alone. No one

is calling my name. No one is serving me food. I had

to control my own schedule- set rules for myself. It's

a lot of self-management.” Employing time manage-

ment skills and self-discipline, such as “getting your-

self in a position where your brain is ready to learn,”

or independently engaging in “med management”

also emerged as a recommendation across several

participants.

Participants also recommended that students with

disabilities investigate “school values” “university

culture,” “disability services offered,” and “social

life” when deciding where to attend college to ensure

that it aligns with their own preferences and needs.

Similarly, participants suggested “looking at faculty

member ratings,” course sizes, and teaching assistant

ratios to make informed decisions about the cours-

es they take. Finally, participants recommended stu-

dents “try to enjoy and have fun” in college and take

advantage of college as “a very unique experience” to

find a “support group” or “friends…to talk to.”

Discussion

The purpose of this study is to explore the per-

ceptions and experiences of college students with

disabilities, including their preparation for college.

Participants noted cycles of disempowerment and

empowerment in which they focused on both positive

and negative aspects of receiving a disability diagno-

sis, including experiencing self-doubt and confusion,

as well as a diagnosis providing relief and serving as

a way to legitimize their need for services and sup-

ports. This finding contributes to an understanding of

both the positive and negative aspects of receiving a

diagnosis can have on students and how professionals

may support individuals to mitigate negative expe-

riences and facilitate positive outcomes. Participants

also reported that many educational professionals

were either unsure or unwilling to provide appropri-

ate accommodations and that professionals demon-

strating warmth and genuine care for their wellbeing

was as much, if not more important than academic

accommodations. These findings are also consistent

with literature that highlights a lack of preparation

of university faculty and staff to effectively support

students with disabilities with intensive academic,

social, or mental health needs (Dipeolu et al., 2015;

Dryer, Henning, Tyson, & Shaw, 2016; Hong, 2015;

Odom & Wong, 2015) and the impact of educator dis-

positions (Francis, Blue-Banning, Turnbull, Haines,

& Gross, 2016). However, these findings contribute

to the literature by presenting the unique perspectives

of adults with disabilities with varied educational ex-

periences and providing recommendations for profes-

sionals to better support students (e.g., increase their

knowledge of disabilities and individualized accom-

modations, teach students how to deal with discrim-

ination and access available resources). Participants

also noted that mental health support was an area in

which individuals require greater support and profes-

sionals need better training; a need consistently noted

in the literature on high school and college students

with disabilities (Francis et al., 2018; Poppen, Sin-

clair, Hirano, Lindstrom, & Unruh, 2016). These is-

sues and experiences caused participants to engage

in a “constant fight” to experience success in college

and resulted in a need for ongoing personal resilience

and self-advocacy.

Participant inclusive education experiences also

provided an interesting and much needed student

perspective of the long-term influence of inclusion.

Several participants, but primarily Rûna and Nora

indicated that inclusive educational experiences re-

sulted in a lack of belonging and support. In fact, all

participants described feeling isolated and recom-

mended that other students with disabilities locate

other peers with disabilities for support. This finding

is consistent with literature that cites a sense of iso-

lation among students with disabilities (Dryer, et al.,

2016; Van Hees et al., 2014), but, in some ways, con-

tradicts literature that bolsters the benefits of inclu-

destigmatizing disability within the family unit by talking about

disabilities, setting high expectations, and openly discussing

student needs, strengths, strategies, and resources. In general,

participants wished their parents were more “hands-on” to help

them locate available services and supports following high

school. Delmy suggested that families visit college campuses

with their students to “see what [colleges] offer for disability

services so they can find the best way to help their child that's

going into college.” However, participants also recommended

that “helicopter parents…who do everything for their kid” do their

child a “disservice” by not teaching them to develop

“responsibility” and “their own tool kit to survive” more

independently into adulthood. Student recommendations.

Participants primarily recommended that college students with

disabilities “always advocate” for themselves and “not be afraid”

to ask for help in college because “nobody is going to do it for

you.” Participants suggested that other students “be

themselves,” “don't shy away from your disability,” “be self-aware

[if they are] feeling anxious or depressed,” and “contact the

disability office…to see what resources they provide.”

Participants also recommended that students learn “take care of

yourself” without the support of their parents, as Shivani noted:

“It hit me that I was alone. No one is calling my name. No one is

serving me food. I had to control my own schedule- set rules for

myself. It's a lot of self-management.” Employing time

management skills and self-discipline, such as “getting yourself

in a position where your brain is ready to learn,” or

independently engaging in “med management” also emerged as

a recommendation across several participants. Participants

also recommended that students with disabilities investigate

“school values” “university culture,” “disability services offered,”

and “social life” when deciding where to attend college to ensure

that it aligns with their own preferences and needs. Similarly,

participants suggested “looking at faculty member ratings,”

course sizes, and teaching assistant ratios to make informed

decisions about the courses they take. Finally, participants

recommended students “try to enjoy and have fun” in college

and take advantage of college as “a very unique experience” to

find a “support group” or “friends…to talk to.”

The purpose of this study is to explore the perceptions

and experiences of college students with disabilities,

including their preparation for college. Participants

noted cycles of disempowerment and

empowerment in which they focused on both positive and

negative aspects of receiving a disability diagnosis, including

experiencing self-doubt and confusion, as well as a diagnosis

providing relief and serving as a way to legitimize their need for

services and supports. This finding contributes to an

understanding of both the positive and negative aspects of

receiving a diagnosis can have on students and how

professionals may support individuals to mitigate negative

experiences and facilitate positive outcomes. Participants also

reported that many educational professionals were either unsure

or unwilling to provide appropriate accommodations and that

professionals demonstrating warmth and genuine care for their

wellbeing was as much, if not more important than academic

accommodations. These findings are also consistent with

literature that highlights a lack of preparation of university faculty

and staff to effectively support students with disabilities with

intensive academic, social, or mental health needs (Dipeolu et

al., 2015; Dryer, Henning, Tyson, & Shaw, 2016; Hong, 2015;

Odom & Wong, 2015) and the impact of educator dispositions

(Francis, Blue-Banning, Turnbull, Haines, & Gross, 2016).

However, these findings contribute to the literature by presenting

the unique perspectives of adults with disabilities with varied

educational experiences and providing recommendations for

professionals to better support students (e.g., increase their

knowledge of disabilities and individualized accommodations,

teach students how to deal with discrimination and access

available resources). Participants also noted that mental health

support was an area in which individuals require greater support

and professionals need better training; a need consistently noted

in the literature on high school and college students with

disabilities (Francis et al., 2018; Poppen, Sinclair, Hirano,

Lindstrom, & Unruh, 2016). These issues and experiences

caused participants to engage in a “constant fight” to experience

success in college and resulted in a need for ongoing personal

resilience and self-advocacy. Participant inclusive education

experiences also provided an interesting and much needed

student perspective of the long-term influence of inclusion.

Several participants, but primarily Rûna and Nora indicated that

inclusive educational experiences resulted in a lack of belonging

and support. In fact, all participants described feeling isolated

and recommended that other students with disabilities locate

other peers with disabilities for support. This finding is consistent

with literature that cites a sense of isolation among students with

disabilities (Dryer, et al., 2016; Van Hees et al., 2014), but, in

some ways, contradicts literature that bolsters the benefits of

Journal of Postsecondary Education and Disability, 32(3)

257

sion, including expanded social circles, and feelings

of belonging (Dessemontet, Bless, & Morin, 2012;

Francis et al., 2016). Further, this study adds infor-

mation on the outcomes of inclusion in high school,

which is not often reported in the literature (Ches-

more, Ou, & Reynolds, 2016).

Finally, although it was not central to our research

questions, all participants discussed the influence of

interactions with their families. This finding supports

literature documenting the ongoing roles that fami-

lies play in the lives of individuals with disabilities

(Cullaty, 2011). However, this study adds information

about the preferences of college students with disabil-

ities, as well as the critical role that family culture

plays in college student experiences. For example,

although family culture and expectations resulted in

feelings of isolation and insecurity for several par-

ticipants, all participants also provided at least one

unprompted example of a way in which a member

of their family provided them support. It is clear that

family interactions are highly influential for all indi-

viduals (Gilbert, 2004), but this study indicates that

these experiences are likely more impactful for U.S.

college students with disabilities from non-Western

backgrounds than those from Western backgrounds.

Limitations

This study has four primary limitations. First, our

initial recruitment procedures of distributing a survey

through the university disability service office pre-

vented us from directly contacting participants, thus

diminishing our ability to control to whom the initial

offer to participant was offered. Second, this study

relied on convenience sampling to report the in-depth

experiences of eight participants. Although qualita-

tive research is not intended to be generalized across

populations (Bogdan & Biklen, 2007), the sampling

techniques used and relatively small sample size di-

minishes our ability to ensure that our themes reflect

the experiences of the majority of students with dis-

abilities registered with the disability service office.

Third, aspects of participant characteristics varied

widely (e.g., number of years in college, disability

diagnosis) and reflect the diversity of the university

they attended. For example, a recent report indicates

that students attending the university come from

over 130 countries and three of the eight partici-

pants were immigrants or from immigrant families.

However, we are unable to gain access to disabili-

ty service office records to determine whether the

characteristics of the participants are representative

of all students served by the office. Fourth, although

there are benefits from collected qualitative data

in-person (Opdenakker, 2006), the principal investi-

gators conducted four interviews over the phone due

to participant preferences.

Implications

This study highlights the need for pre-service and

in-service professional development for K-12 edu-

cators and college faculty/staff on how to (a) better

understand the nuances of different disabilities across

individuals; (b) provide effective accommodations;

supports after graduation; (d) prepare students for

barriers they may experience in college and the work-

place; and (e) provide emotional support to students

with disabilities. In addition, study findings indicate

that college students continue to interact with and

turn to their families for support, even though fami-

lies do not always provide effective support for their

loved ones with disabilities or promote their indepen-

dence. Students stated that they wanted their families

to maintain high expectations and support them in lo-

cating and accessing resources after high school, but

that it was important from them to not to become “he-

licopter” parents so that students could independently

find their way. These actions can be encouraged by

secondary and higher education professionals provid-

ing families with parent workshops on how to engage

in supported decision-making and connecting fam-

ilies to information and community resources (e.g.,

Center for Independent Living, vocational rehabil-

itation; Francis, Fuchs, Johnson, Gordon, & Grant,

2016). Shivani also recommended that universities

provide two seminars during freshman orientation:

one for the students and one for their families, with

both focusing on independence while respecting cul-

tural norms and differences. Further, high school and

college professionals need to develop a stronger un-

derstanding of cultural differences related to family

expectations and conceptualizations of disability in

order to best support students from varying cultural

backgrounds. This can be accomplished by provid-

ing person-centered planning processes for individual

students (Haines, Francis, Shepherd, Ziegler, & Ma-

bika, 2017), collaborating with cultural brokers, or by

learning from guest speakers (e.g., student groups)

with expertise in specific cultures.

Mental health also emerged as an ongoing need

among participants. High schools and universities

should consider conducting universal screening for

all students to determine the nature and degree of

their mental health needs. Participants recommended

that educators consider social and emotional develop-

ment as a primary focus when working with students

with disabilities, and that mental health supports and

services should be available to all students, regardless

inclusion, including expanded social circles, and feelings of

belonging (Dessemontet, Bless, & Morin, 2012; Francis et al.,

2016). Further, this study adds information on the outcomes of

inclusion in high school, which is not often reported in the

literature (Chesmore, Ou, & Reynolds, 2016). Finally,

although it was not central to our research questions, all

participants discussed the influence of interactions with their

families. This finding supports literature documenting the ongoing

roles that families play in the lives of individuals with disabilities

(Cullaty, 2011). However, this study adds information about the

preferences of college students with disabilities, as well as the

critical role that family culture plays in college student

experiences. For example, although family culture and

expectations resulted in feelings of isolation and insecurity for

several participants, all participants also provided at least one

unprompted example of a way in which a member of their family

provided them support. It is clear that family interactions are

highly influential for all individuals (Gilbert, 2004), but this study

indicates that these experiences are likely more impactful for

U.S. college students with disabilities from non-Western

backgrounds than those from Western backgrounds.

This study has four primary limitations. First, our initial recruitment

procedures of distributing a survey through the university disability

service office prevented us from directly contacting participants,

thus diminishing our ability to control to whom the initial offer to

participant was offered. Second, this study relied on convenience

sampling to report the in-depth experiences of eight participants.

Although qualitative research is not intended to be generalized

across populations (Bogdan & Biklen, 2007), the sampling

techniques used and relatively small sample size diminishes our

ability to ensure that our themes reflect the experiences of the

majority of students with disabilities registered with the disability

service office. Third, aspects of participant characteristics varied

widely (e.g., number of years in college, disability diagnosis) and

reflect the diversity of the university they attended. For example, a

recent report indicates that students attending the university come

from over 130 countries and three of the eight participants were

immigrants or from immigrant families. However, we are unable to

gain access to disability service office records to determine

whether the characteristics of the participants are representative

of all students served by the office. Fourth, although there are

benefits from collected qualitative data in-person (Opdenakker,

2006), the principal investigators conducted four interviews over

the phone due to participant preferences.

This study highlights the need for pre-service and in-service

professional development for K-12 educators and college

faculty/staff on how to (a) better understand the nuances of

different disabilities across individuals; (b) provide effective

accommodations; (c) assist students to locate resources,

services, and supports after graduation; (d) prepare students for

barriers they may experience in college and the workplace; and

(e) provide emotional support to students with disabilities. In

addition, study findings indicate that college students continue to

interact with and turn to their families for support, even though

families do not always provide effective support for their loved

ones with disabilities or promote their independence. Students

stated that they wanted their families to maintain high

expectations and support them in locating and accessing

resources after high school, but that it was important from them

to not to become “helicopter” parents so that students could

independently find their way. These actions can be encouraged

by secondary and higher education professionals providing

families with parent workshops on how to engage in supported

decision-making and connecting families to information and

community resources (e.g., Center for Independent Living,

vocational rehabilitation; Francis, Fuchs, Johnson, Gordon, &

Grant, 2016). Shivani also recommended that universities

provide two seminars during freshman orientation: one for the

students and one for their families, with both focusing on

independence while respecting cultural norms and differences.

Further, high school and college professionals need to develop a

stronger understanding of cultural differences related to family

expectations and conceptualizations of disability in order to best

support students from varying cultural backgrounds. This can be

accomplished by providing person-centered planning processes

for individual students (Haines, Francis, Shepherd, Ziegler, &

Mabika, 2017), collaborating with cultural brokers, or by learning

from guest speakers (e.g., student groups) with expertise in

specific cultures. Mental health also emerged as an ongoing

need among participants. High schools and universities should

consider conducting universal screening for all students to

determine the nature and degree of their mental health needs.

Participants recommended that educators consider social and

emotional development as a primary focus when working with

students with disabilities, and that mental health supports and

services should be available to all students, regardless

Francis et al.; Constant Fight

258

of diagnoses. Education settings may also consider

offering students the opportunity to briefly consult

with mental health experts such as school psycholo-

gists or social workers to determine if additional fol-

low up support is necessary, offer basic coping and

support strategies to meet student needs, and provide

suggestions as to where students may locate addition-

al support on and off campus. Similarly, participants

indicated a need for supportive peer groups with

other students with disabilities so they can find peers

to whom they can relate, particularly during stressful

times. High schools and universities can collaborate

with student leaders to create face-to-face or online

student organizations to reduce isolation, share strate-

gies, and generally provide emotional, logistical, and

social support (Francis et al., 2018).

Finally, although inclusive educational practic-

es can result in numerous benefits (Chesmore et al.,

2016; Dessemontet et al., 2012), our findings indicate

that educators should maximize student outcomes by

acknowledging disability as part of the natural human

experience in order to increase an understanding and

comfort among all stakeholders, decrease stigma, and

help individuals with disabilities to access resources

and systems of support (including other people with

similar disabilities). Participants recommended that

educators need more information about disabilities,

including how to recognize various disabilities, make

appropriate modifications, and use technology to sup-

port the independence of students. They also spoke of

a need for information sharing with students and their

families and for educators to better prepare students

with disabilities for “real life.” When speaking of the

cycle of empowerment and disempowerment, partici-

pants stated that respect for all individuals was of the

utmost importance in secondary and higher education

settings. All students need to feel safe, validated, and

that they treated fairly and with dignity.

Future Research

Future research should seek to recruit larger num-

bers of participants with greater levels of diversity.

More specifically, researchers should seek to purpose-

fully recruit non-majority race/culture and historically

marginalized populations to provide important in-

formation on the influence of social capital, cultural

values related to family interdependence, and other

cultural values and norms (including conceptualiza-

tions of disability self-determination) that are crucial

for facilitating positive outcomes for all stakeholders

(Trainor, 2005, 2010). Replication of this study with

specific student populations, such as students with Au-

tism Spectrum Disorder who are increasingly attend-

ing college (Brown & DiGaldo, 2011), would provide

important information for professionals to focus on the

specific needs of each disability population.

Of the 23 students who originally volunteered to

participate in this study, only eight completed an inter-

view. Additional research is need to determine more

effective ways to successfully recruit college students

with disabilities to engage in this important line of

research. Moreover, an examination of the perspec-

tives of education professionals and families related

to the key themes that emerged in this study would

provide a deeper understanding of ways in which the

field may improve student outcomes.

In addition, given the positive and negative dis-

cussions related to diagnosis and inclusion, more

research is needed to determine the most effective

methods for ensuring that receiving a diagnosis is

an empowering rather than traumatic experience and

that inclusion does not incidentally result in isolation

and limited access to required information, resources,

and support. Participants also spoke about the need

for mental health services; future research is need-

ed to develop a comprehensive framework and ac-

companying strategies to address mental health needs

among diverse college-age students with disabilities.

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diverse college-age students with disabilities.

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About the Authors

Dr. Grace L. Francis received her B.A. and M.A.

degrees in special education from Webster Universi-

ty and Ph.D. from University of Kansas. Her profes-

sional experiences include directing a postsecondary

education program for young adults with disabilities,

serving as a direct support provider for individuals

with low-incidence disabilities aged 18 months to 42

years, and teaching in a culturally and economically

diverse urban school district. She is currently an assis-

tant professor of Special Education at George Mason

University. Her research interests include family-pro-

fessional partnership policies and practices and post-

school outcomes that result in a high quality of life

for individuals with significant support needs. She

can be reached by email at: [email protected].

Dr. Jodi Duke received her B.A. degree in Ele-

mentary Education from the University of Michigan,

her M.S. in Special Education from Johns Hopkins

University and Ed.D. from Johns Hopkins Universi-

ty. Her experience includes working as a special ed-

ucator for the Kennedy Krieger Institute, Baltimore

County Public Schools and Howard County Public

Schools and serving students and families as a special

education advocate. She is currently an Associate

Professor and the Academic Program Coordinator of

the Autism Spectrum Disorders Graduate Program in

the Division of Special Education and disAbility Re-

search. Her research focuses on postsecondary transi-

tion and college supports for individuals with Autism

Spectrum Disorder and other disabilities. She can be

reached by email at: [email protected].

Megan Fujita received her M.S.W. and B.A.

from the University of Michigan, and is currently a

Ph.D. student in Education Policy at George Mason

University, where she serves as a research scholar

studying higher education services for students with

disabilities and mental health diagnoses. Previously,

Megan worked as a mental health social worker and

has worked in several positions working in higher

education, including as an Associate Director for the

Council on Social Work Education, and currently as

the Assistant Dean of Assessment & Evaluation at the

George Washington University School of Nursing.

She can be reached by email at: [email protected].

Jason Sutton is a student in the Ph.D. program at

George Mason University. He has a M.S. in Public

Administration. Before beginning the Ph.D. program,

he worked for 12 years in public education. In his

first seven years, he was a special education teacher

Dr. Grace L. Francis received her B.A. and M.A. degrees in

special education from Webster University and Ph.D. from

University of Kansas. Her professional experiences include

directing a postsecondary education program for young adults

with disabilities, serving as a direct support provider for

individuals with low-incidence disabilities aged 18 months to 42

years, and teaching in a culturally and economically diverse

urban school district. She is currently an assistant professor of

Special Education at George Mason University. Her research

interests include family-professional partnership policies and

practices and post-school outcomes that result in a high quality

of life for individuals with significant support needs. She can be

reached by email at: [email protected].

Dr. Jodi Duke received her B.A. degree in Elementary Education

from the University of Michigan, her M.S. in Special Education

from Johns Hopkins University and Ed.D. from Johns Hopkins

University. Her experience includes working as a special

educator for the Kennedy Krieger Institute, Baltimore County

Public Schools and Howard County Public Schools and serving

students and families as a special education advocate. She is

currently an Associate Professor and the Academic Program

Coordinator of the Autism Spectrum Disorders Graduate

Program in the Division of Special Education and disAbility

Research. Her research focuses on postsecondary transition and

college supports for individuals with Autism Spectrum Disorder

and other disabilities. She can be reached by email at:

[email protected].

Megan Fujita received her M.S.W. and B.A. from the University

of Michigan, and is currently a Ph.D. student in Education Policy

at George Mason University, where she serves as a research

scholar studying higher education services for students with

disabilities and mental health diagnoses. Previously, Megan

worked as a mental health social worker and has worked in

several positions working in higher education, including as an

Associate Director for the Council on Social Work Education, and

currently as the Assistant Dean of Assessment & Evaluation at

the George Washington University School of Nursing. She can

be reached by email at: [email protected].

Jason Sutton is a student in the Ph.D. program at George Mason University. He has a M.S. in

Public Administration. Before beginning the Ph.D. program, he worked for 12 years in public

education. In his first seven years, he was a special education teacher working with students with

learning disabilities and emotional disabilities in a secondary setting. In his last five years, he was

a building administrator in a high need school. As a building principal, Jason led several reading

initiatives to promote student reading achievement. Jason research interest includes school

leadership practices that foster systemic change for school wide initiatives. He can be reached by

email at [email protected].

Journal of Postsecondary Education and Disability, 32(3)

261

working with students with learning disabilities and

emotional disabilities in a secondary setting. In his

last five years, he was a building administrator in a

high need school. As a building principal, Jason led

several reading initiatives to promote student reading

achievement. Jason research interest includes school

leadership practices that foster systemic change for

school wide initiatives. He can be reached by email at

[email protected].

262

Table 1

Participant Demographic Information

Pseud-

onym

Primary

Disability

Primary

Support

Need

Gender Race/

Ethnicity

Language

Used at

Home

Age in

Years

Years in

College

Resi-

dence

Tae Mental

health

Self-man-

agement

Make Asian/

Asian

American

English 23 4 Off

campus

Rodney Multiple

disabilities

Academ-

ics

Make White/

Caucasian

English 25 or

older

5 or more Off

campus

Shivani Mental

health

Vocation-

Female Asian/

Asian

American

English 18 Less than

Off

campus

Nora Specific

learning

disability

Academ-

ics

Female White/

Caucasian

English 25 or

older

5 or more Off

campus

RÛna Hearing

impair-

ment

Self-Ad-

vocacy

Female Middle

Eastern

Kurdish 24 4 Off

campus

Lydia Other

health im-

pairment

Vocation-

Female White/

Caucasian

English 25 or

older

5 or more Off

campus

Landon Visual im-

pairment

Vocation-

Male White/

Caucasian

English 19 1 Off

campus

Delmy Hearing

impair-

ment/

Autism

Academic Female White/

Caucasian

English 24 5 or more Off

campus

Note. Self-management needs included support in organization, stress management, mental health, and time

management. Academic needs included support in coursework, writing, and test-taking. Vocational needs

included career awareness, workplace skills, and interviewing. Self-advocacy needs included requesting sup-

port and a knowledge of rights. Lydia’s other health impairment was attention deficit disorder (ADD).

Pseudonym

Self-management

Academics

Vocational

Academics

Self-Advocacy

Vocational