*Article* **Graduating University as a Woman with Down Syndrome: Reflecting on My Education**

**Rachel High and Sally Robinson \***

Disability and Community Inclusion, College of Nursing and Health Sciences, Flinders University, Bedford Park, SA 5042, Australia; high0027@flinders.edu.au

**\*** Correspondence: sally.robinson@flinders.edu.au

**Abstract:** This paper reflects on the experience of being a woman with Down Syndrome who completed an undergraduate degree at an Australian university. This autoethnography is based on a year-long research project completed as part of my studies. I did a literature review about the experiences of other students with an intellectual disability at university. Then, I wrote about my own university experience. I found that the parts of my own educational journey were linked to each other like stepping-stones. Four main things came from my research: the importance of the journey before going to university; the isolation experienced by students in this situation; how stereotypes might affect students; and teaching methods that can be used to support students during their time at university. This experience changed me as a person. I gained skills and confidence whilst being at university, as well as the ability to see where I am going in life. This experience made me feel more part of society. While there were many wonderful parts, it was not an easy journey. People with an intellectual disability have a right to have an education. What makes the biggest difference is the way we are treated by other people. It would be good for students with an intellectual disability to be accepted and treated with respect. People may have a different way of learning, and it would be good if this was recognised.

**Keywords:** university; higher education; intellectual disability; inclusive education; autoethnography; Down Syndrome

### **1. Introduction**

This paper is an autoethnography of a woman with Down Syndrome who has recently completed an undergraduate course at Flinders University, South Australia. This paper is a reflection on my own experience of being a student at university.

This paper was written from work I did in a year-long research project as part of my studies. Sally helped me by supervising this project and writing this paper with me. First, I did a literature review about the experiences of other students with intellectual disabilities at university. Then, I wrote about my own university experience.

In this paper, we talk about how I completed this project, and some of the important things about my experience of university. I found out four main things in my research through both my own experience and by learning from other people's experiences at university. In this paper, the following are discussed:


#### **2. Materials and Methods**

The methodology used for this project was autoethnography. Autoethnography is a relatively new qualitative research approach which involves researchers critically analysing

**Citation:** High, Rachel, and Sally Robinson. 2021. Graduating University as a Woman with Down Syndrome: Reflecting on My Education. *Social Sciences* 10: 444. https://doi.org/10.3390/socsci 10110444

Academic Editor: Patricia O'Brien

Received: 16 September 2021 Accepted: 19 November 2021 Published: 20 November 2021

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**Copyright:** © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

their experiences and providing an understanding of how these compare to the experiences of others from a similar social group (Chang 2016). By collecting personal accounts and reflecting critically on the social meanings of these experiences, it allows researchers to develop an understanding of their own experiences and how they have shaped them (Liggins et al. 2013). Autoethnography also asks the researcher to think about how analysing their experience can help them understand other people's experiences by thinking about social and cultural meanings (Chang 2016).

At first, I found it hard to think about this unfamiliar word and how it related to my own life and experiences. So, I broke it into parts. I thought about it as auto—referring to yourself; ethno—looking at your own journey; and graphy—referring to the research. Therefore, for me this word described the study of my own 'journey of learning' when compared with those of other people.

#### *Methods*

This research was conducted in stages. Firstly, I did my literature review. The aim of the literature review was to find out about the experiences of people with intellectual disability at university and their ideas for improving university education. Sally conducted the first review, using university databases. The review set terms to search for qualitative research; literature about the views of students with intellectual disability themselves; and research in university settings. To make the project manageable, we reduced the scope of the literature review and selected the most relevant nine articles for me to read in full. Some of the papers were hard to read because they were very long, and it was difficult to find the information needed. The Read Aloud program on the computer was useful. I am a visual learner, so I worked with my mother to help me understand the main ideas in the papers. She drew diagrams of the ideas, and we talked about how the ideas affected the people who were in the research. I then looked for information which might answer some of the questions. These were selected and recorded on to templates under the heading of the questions. Each author's comments supporting the discussion was combined to relate to the question.

I had a student mentor, Kathryn, who helped by summarising some of the reading for me too. We were interrupted by COVID-19, which made it very hard. We had to go online, which made it very hard to work together when we did not know each other well. When the lockdown had eased, we were able to all meet face to face in the university. This was better because we exchanged easier conversation together, and there was a warm feeling between us. For example, with Sally, we were looking at the paper together and trying to figure out which sentence should go where, and she could write instructions straight on to the paper. This was helpful because we worked as a team. I also audio-recorded the sessions so that I could listen to them again.

All of this work helped us when it was time to start the next stage—my autoethnography. The first step in my autoethnography was that I related the educational story of my life in conversation with Sally. I found that the parts of my own educational journey were linked to each other like stepping-stones. The next step was to write in more detail about each of the stepping-stones on my education pathway. This took a long time and a lot of energy—I worked very hard. I conducted a series of interviews with people who were involved in my education, and I did a lot of personal reflection.

I needed to work out how these ideas fitted together. Once I had words written down in each of my main stepping-stones, we looked together for things that came up more than once, and where my experiences connected to the big ideas that were in my literature review. This is how we came up with the themes.

With the same kind of assistance as I used for the literature review, I critically analysed the themes and compared my experiences of university with the information I found in the literature review. This allowed me to identify the importance of the themes and how they contribute to new ways of thinking about the social world of university education for people living with intellectual disability.

#### **3. Results**

In this part of the paper, I have written about the major 'stepping-stones' in my education. These are about my high school education, the Duke of Edinburgh's award, starting university life, film studies, the foundation course, and the Bachelor of Arts degree. They are all important because each one opened a door to the next opportunity.

#### *3.1. High School*

I lived in a South Australian country town until I was 28 years old, and all my formal schooling was there. In primary school, I was in a special small class but in regular classes for some of my subjects.

When it was time to go to high school, I wanted to be with people I already knew, not just people with a disability. I had the choice of two high schools, and I visited them both to see which one was the best for me. When I arrived at the second one, my friends from primary school rushed over to meet me; so I decided this was the school I wanted to go to.

In high school, I was included in mainstream classes for subjects like English, history, and drama. For other subjects, I went to the learning centre and had a Student Support Officer to help me with the more difficult lessons.

I learnt some other skills: one was using the computer and another was in the drama class. I learnt about work experience and some sports. I learnt how to play basketball, hockey, as well as weightlifting. I felt comfortable with these lessons and enjoyed gaining self-confidence. Some of my friends in high school were Indigenous Australians and they involved me in an Indigenous Australian school club.

In the last years of school, the principal allowed me to go to Adelaide every Friday as one of my school days to go to dance workshops with a well-known inclusive dance organisation.

I had a great time when I went with the school to Mount Hotham in Victoria, during a week's holiday in July. There was snow everywhere, I had a whale of a time being on the snow and having an instructor teaching me how to ski.

When I left school, I was very pleased to get my modified SACE (school leaver's) certificate. I then went to TAFE (technical college) for computing and mathematics.

#### *3.2. Duke of Edinburgh's Award*

From ages 14 to 21, as well as schoolwork I was doing the Duke of Edinburgh's Award Scheme for people with special needs. The purpose of the Duke of Edinburgh's Award is about expanding people's vision and introducing them to a wider knowledge of what is around them.

There are four different areas: (1) Volunteering; (2) Physical; (3) Skills; and (4) Expedition, with levels of Bronze, Silver, and Gold.

I volunteered with the Salvation Army and the special needs program where I did secretarial work, copy typing, and photocopying. I helped the teachers by playing with the children, reading them stories, and helping with hydrotherapy. I took up physical exercise and went to line dancing and swam in the Special Olympics.

I wanted to learn how to play the piano and study some classical music. I took some sessions in culinary arts, as well as poetry and theatre. The expedition was about going camping, lighting a fire, putting up a tent, learning to use a compass, bushwalking, horse trekking, and safety precautions if ever we got lost. The last project for my Gold Award was talking to Prime Minister Mr John Howard about the value of arts for people with disability. He was very friendly.

It did a lot for me. It was a lot of fun; I had to learn how to find people in the community to help me with each project. So, I met new people and learnt many new things. I had to meet up with my mentors regularly to work on the project, and I had to write it up and present it to a panel.

#### *3.3. Starting University Life*

After I received my Gold Award at Government House, the Duke of Edinburgh's Award director asked me what I was going to do next. She then introduced me to the idea of applying for the Up the Hill program at Flinders University. This program includes people with disability in classes, with support from student mentors. They participate in the learning by auditing subjects and gain the experience of being at university. People learn what the atmosphere is like and how the student feels by stepping into higher education. So, it was the link for me to the next experience in my life.

I was invited to the university for afternoon tea. I had a conversation with the director of the program, where he asked what subject I was interested in. I said I was interested in drama. I later learnt that the conversation had been my interview for the program. I was incredibly happy to be offered a place.

Over the three years in the Up the Hill program, I audited many subjects—English, Creative Writing, Drama, Poetry, Cinema and Fantasy, Film Appreciation, and Screen Studies. I was totally included in the classes and I was involved in the discussion groups. The film studies class went on location to make a short film. I enjoyed being part of the team and to be included in a filmmaking experience. I helped with the lighting and I played the voice over in the film.

When the three-year course was finished, I crossed the stage in a graduation ceremony with beautiful music playing. I was very proud because some of my teachers from my secondary school came to the ceremony. It was a wonderful experience and I enjoyed it. The program was an inspiring experience for me. Later, some of my friends followed me in enrolling in the program.

#### *3.4. Film*

During my time in the Up the Hill program, I met the lecturer of screen studies, a man named Tom Young. He found out I wrote stories and suggested that I could make a film out of one of them. He said he would mentor and guide me to direct the film. It took me a while to write the film script, it was much more complicated than just writing the story.

After the Up the Hill program, it took me a further two years to do film production. During this time, there were some media students who were involved with me in the making of the film. We were all learning what the filmmaking industry was like. The lecturer worked with me on characters, costumes, music, finding a site, and everything else that was needed to make a film. This film was shown in the cinema and went to film festivals in different parts of the world. The film was shown on television at Christmas time.

#### *3.5. Foundation Studies Course*

It was after this experience that coordinators from the program suggested the idea of me taking the Foundation Studies Course. This course is the beginning of academic study at university. At first, I was not sure if I could do it; however, I gave this a try. I asked permission from the course director for my parents to come with me to the classrooms so that they could help me with the course. The tutors agreed with this, and I went to the classes three nights a week. Some of the topics were Mathematics, the Ecology of the River Murray, and English. There was also a survey on Nuclear Power Stations. I interviewed some people on that topic, hearing their point of view. I also did a topic on China and how it was building up bases in the China Sea.

The study was hard and all very new to me. I learnt a lot about tutorial work as well as having to write assignments. This felt different to going to the Up the Hill program because, when I was auditing topics, I did not have to do any assignments. Now I was working to get a pass in my studies. There was also a lot of homework. At the end of the course, I was pleased to learn that I managed to gain enough marks to apply for a Bachelor of Arts Degree.

#### *3.6. Bachelor of Arts Degree*

I began attending Flinders University as an Arts Degree student when I was 35 and have undertaken one, or sometimes two, topics each semester. Coming to university as a student became a great thrill to me, but daunting at the same time. From this experience I feel I have learnt so much during these semesters and about so many different topics.

The topics I enrolled in were Drama for my Major and Screen Studies for my Minor. There was the Stanislavski Workshop, this involved about learning the history of the dramaturge himself. He taught that acting is something you do instead of something you show. This motto gave me the inspiration to understand not only myself but to understand the techniques of theatre. There were acting workshops and learning about the history of the stage, including from different nationalities such as Asian Dramatic Traditions, the way both the Japanese and the Chinese use their craft theatrically including the way they use their body movements. These styles of movement are called 'Noh' and 'Kabuki'. This influenced me in my own dance movements. I also learnt about stage and film directors and had to make some short films myself.

In Aboriginal Studies I learnt about the children being taken away, and how much I related to their sadness. I learnt about the history of the Aboriginal Australians, including what they struggled with over the years through their historical art. What stories they brought out whilst crafting their baskets and how the DNA of the original people is connected to these baskets. Some of this I did not know before. Another subject I studied was English. I was very fascinated with writing at the time.

Studying at university was very different to being part of the Up the Hill program, or even the Foundation Studies Course. Now I was studying to gain results, working towards an actual degree. Before the beginning of the first semester, I went to the Disability Office to find out what support was available. I was informed that I could have an access plan towards my studies, for example extra time for assignments and exams. With this, I could have a room of my own to take the exam and have somebody with me to assist me to understand the questions. When I queried about having a mentor, they said they could not provide that. They did not do it for people with intellectual disability, only for people with physical or visual disabilities.

I soon found that at university I was on my own and it was all very different. As a student I was by myself. I had to learn how to get to the university on the bus, and I had to try to find the rooms where lectures and tutorials were located. This became extremely hard for me because I felt very lonely on the campus, and I did not know anyone. People did not talk to me, and every so often I could not find the class or felt too shy to go in. So, I missed some lessons. Being on my own around the campus, at times I felt that I wanted to go home and not come back to university.

Some of the activities I had done in the Up the Hill program with a mentor were going to orientation week, dancing with people at a community fair in the university hub, and trying out the wonderful food they had there. I learnt how to socially interact with mentors outside of the university environment, as an example taking a mentor to a show. Now, I felt very lost without this contact.

The university did not fund mentors for students with intellectual disability. For me to have support at university, my family and circle of support had to raise funds. It took a lot of effort to organise. With this support, I was able to pay a student in the class to be my buddy. This made all the difference to me being at university, I got to know the student as well. I met their friends and I felt happier being safe at university. We also worked on the topics together. We sometimes went to the library to look at my studies, and we enjoyed having lunch together. On a social aspect, we went out either watching a show or just hanging around talking about anything we wanted.

#### **4. Discussion**

My journey through education has been very rewarding, but it has not always been easy. In the next section of the paper, I reflect on the isolation I felt once I got to university, how the stereotypes about people with disability affected me, and what helped me in my studies. In this section, I am also using the literature to draw on the experiences of other students who have been in my shoes and have been involved in research projects.

#### *4.1. The Importance of the Journey before Going to University*

From my experience, something that stands out to me is how important it has been for me to have had lots of activities and experience before I went to university.

I have been involved in many community projects as well as drama for many years. Through this I have met lots of people and learned lots of new things. My parents and other people were always finding new activities for me to get involved in. This was fun and it always led onto the next exciting thing to do. Being involved with the Up the Hill program where I was auditing topics and had a mentor with me helped me to get ready for university life.

Other people have said they felt like this too. Philip and Heidi shared their views in Wilson et al. (2012), saying that their early experiences were important in building their confidence and readiness for university study: "They felt that these were difficult but important years in their development during which they matured, volunteered in the community and maintained entry-level jobs" (Wilson et al. 2012, p. 40).

Like me, both Heidi and Philip were supported by their parents to become included in community activities. They both felt that it was extremely important to state how significant the advocacy of their parents had been in their development, especially in preparing them to succeed at school, to access opportunities and supports at work, to participate in the community, gain access to post-secondary education, and to feel 'normal'. I agree with Philip and Heidi about how lots of experiences in the community can be very helpful before you go into higher education. For me, it was the same.

They thought their opportunities reflected a combination of what their parents wanted for them, what was available, and what they enjoyed and interested them (Wilson et al. 2012). For me, it was the next thing I was introduced to. If something I was interested in came my way, people guided me along that pathway. For me, it was my parents, but also my teachers at school, people from the Up the Hill program, and other friends and family. So, each of the things I did led me on to my journey to university.

#### *4.2. The Isolation Experienced by Students in This Situation*

When I first started attending university, I found it was different to going to the Up the Hill program. On my first day with Up the Hill, I was introduced to my mentor who helped me to find my way around and build friendships with other students. The mentor attended classes with me, helping me to understand what was being said by the tutor, and supported me with the end of semester presentations. Rillotta et al. (2020) explained that mentors attend university classes with students, and they also support them with social activities inside and outside the classroom. They help them learn their way around the university. Other students with intellectual disabilities also said they felt they developed more confidence when they were supported by mentors (Rillotta et al. 2020).

In her research with nine college students with intellectual disability, Paiewonsky explained how certain aspects of being new to college affected students: "feeling different, adjusting to new expectations, having a new identity, transportation, new routines, selfdetermination and new relationships" (Paiewonsky 2011, p. 37). All these aspects needed to be dealt with by the student. This has been a common experience for students, and several studies have shown that students with intellectual disability feel unsure about what to expect, find it stressful, and find it hard to concentrate (Rillotta et al. 2020; May and Stone 2010; Wilson et al. 2012). This was also the situation for me, because all these things affected me in this new experience. I found it to be rather hard without a mentor to guide me. Even though I had been in the Up the Hill program and knew the university well, now being on my own turned out to be a big challenge for me. I also found it hard to concentrate.

Other students have also found this support to be important for feeling more comfortable in the classroom (Kubiak 2017) and for encouraging tutors and lecturers to be more confident in supporting students with intellectual disability (Plotner and May 2019). This individual support was found to help people find their way around the campus and get settled in, as well as start to discover what their strengths are and what they prefer as a subject (Paiewonsky 2011).

#### *4.3. How Stereotypes Might Affect the Students*

It is extremely derogatory for people to say negative things about people with disability. This topic matters because to be unkind to others is the wrong thing to do. It is hurtful and makes them feel like a knife stabbed them in the heart. It makes them feel they are the worst thing around, and that they are not important. This affects them emotionally and they feel useless. In my experience when you are new to university and trying to fit in, these comments and being ignored makes people feel very low. I felt alone when this happened to me and I felt I could not speak. I could not concentrate because these feelings made me so unhappy. I did not feel I wanted to be there. I still find this very hard to talk about. It makes me feel ashamed.

Being harassed or possibly overlooked is not a helpful thing to go through in life. This would scare the person with disability, who may not know what to do and would not know where to find the guidance to do something about it. This is not a good way to go for people with disability, feeling alone and as though they are not allowed to be there.

Other students with intellectual disabilities have experienced stereotyped thinking and discrimination as well. These damaging views include thinking that people with intellectual disability are stupid, cannot learn concepts, and are lower achievers (May and Stone 2010); and that they are not able to learn or even to think for themselves, so may not be able to learn at university (Lightner et al. 2012). Some people have the idea that people with a disability sometimes scheme to get extra support so that they can ask for special privileges and pity (May and Stone 2010). These negative attitudes have a strong impact on students with intellectual disability. It is very hard for students with intellectual disability when other students were judging them and behaving badly towards them (Kubiak 2017), and when tutors talked down to them (Stefánsdóttir and Björnsdóttir 2016). Wilson et al. (2012) relate how one student's mother introduced her to the class and as a result she was teased or ignored by other students. Other students agreed that it was not good to point the disability out to the rest of the class, as it highlighted differences, not similarities (Rillotta et al. 2020).

There were some great times when I did not feel dismissed by the students or by the tutors. This was in media. I felt so much involved in this subject because there were people I was teamed up with and we became very friendly: they did not look or seem fazed about me at all. The conversations we all had were basically getting to know each other, and to help each other with the technological areas about the camera. Here I felt I became part of the group; we were learning together.

The positive experience of being on the stage in my subject 'Drama and the Stage' with people I found easy, and a good way to get along with people I barely knew. They were able to be open enough just to have a conversation with me. As I was teamed up with practically all of them, they made it easier for me working on scenes. The comfort I felt made me feel I was on cloud nine. I felt so at ease with all of them; the environment of the stage made me stronger inside because I managed to be able to have new friends. I got along with a man who made me feel included with anything. I felt more accepted in the practical sessions like media and drama, than I did in the tutorials and lectures. In the hands-on experience, it was easier than in the lecture topics. The students included me in these classes.

#### *4.4. Teaching Methods That Support Students during Their Time at University*

The reason this topic is important is because it would be helpful if teachers found a way to understand what things make it hard for students with disability to work out what the teachers are asking them to learn. Teachers using visual aids make it easier for the students to be more involved in the topic.

Most of the time I felt welcomed by all the tutors in their classes, but I sometimes found it hard to follow what was being said. Some of the tutors spoke quite fast, and when they moved around in the class, while talking, I could not hear them, especially when they walked behind me. I also found it harder to follow the lesson if the tutors did not use a power-point presentation: this is where I got confused and could not concentrate. Sometimes they said things I really did not understand; this is because the academic language is too hard. I tended to blank out at times, not understanding the content of the subject.

Some of these points are also highlighted by some other students and teachers. For example, Kubiak (2017) comments that when it comes to communication for people with disability, this can be hard if they were not getting the opportunity to be involved in the class. This would make them feel as though they cannot contribute to be part of that community. To use their own voice and to be heard by other people would be essential.

Other students with intellectual disability told Kubiak (2017) how they can be supported in the class. It was easier for students to learn at their own pace, with nonjudgmental teachers. He suggests that for some students, it was helpful if they already had the information before the class so that they were prepared for the lesson. The use of brainstorming on the blackboard in addition to color-coding mind maps was helpful. Additionally, if students kept a daily record of what happened in the class, they could recollect what they had done. Students in both the Kubiak (2017) and Plotner and May (2019) studies found the use of power-point presentations very useful, where students could see the words as well as read them. Including a printout of the power-point slides to remember the lesson was also helpful.

What helped me was having mentors, recordings of the lectures and tutorials, having information before the lecture, and power-point presentations. It helps if the tutors speak slower and stand in front of me because I need to see their faces and what they are saying. Read aloud software on the computer is extremely helpful to learn what the lesson will be about ahead of time, and for the readings. I have a recording device where I record the sessions being given, and I can then listen to them later when I get home. Sharing this information with other people at home makes it easier to understand the essays or trying to get my head around what I was supposed to do for the assignments. In these conversations at home, I can take my time to learn more about what I have to do.

It would be good if the university accepted that students with intellectual disability can manage the study with the right support and teaching modifications. For example, aids for visual learners and extra time to complete studies. It has taken me a longer time than other students to bring together all the information I need to understand the assignment. It took me nine years to complete my studies because I only did one topic a semester, sometimes two if it was a workshop.

#### **5. Conclusions**

I feel I have gained so much from being at university. Gaining this much knowledge is worth it because this is what I want to be. This experience has changed me as a person in ways that have made me more confident in myself. I think I have broken new ground, because the results that have come from the work that I have done have been very positive.

I have learnt to reach up to the point where I could possibly make a career out of some of the new thoughts and skills in my life. I believe I have gained some skills whilst being at university, and the ability to see where I am going in life. I have also learned about how there are different ways to learn about a subject I am interested in. There are so many things I have learnt, and I can talk about, and this has made me feel more part of society. This can be so educational—for example, cultural theatre. In the future, I will always look back remembering what it was like obtaining that experience.

While there have been many wonderful parts, it has not been an easy journey. The thought of going to university is exciting, but I was not always sure where it was going to lead in the future. There are many things which are confronting when you are the only person with intellectual disability in your lecture or tutorial group. How does a person with disability cope when stepping into the class seeing people who saw them as being different? How do people with disability cope with the loneliness when other students do not talk to them? This was something I had to face every day.

Knowing you are not alone makes a big difference. I remember how it felt when I was with mentors: I had someone to talk to and become friends with. To me, it felt as though someone actually listened and guided me all the way through my university experience. Once they have a mentor with them, people with intellectual disability know they are not alone. The reason is because they feel there is a safety net, but the major reason is that people with disability have someone to turn to.

I was born with Down Syndrome, and it is part of who I am—I do not know anything different. One way I know about myself is the way other people treat me. Sometimes this makes me feel good about myself, when I am made welcome and like I am wanted in class. Other times, I have been ignored or treated badly. This makes me feel there is something wrong with me. There is nothing wrong with me. I know I can learn, I can feel, and I can see the world the way I choose to see it. People with intellectual disability have all the feelings everyone has, and we want to belong. We have a right to have an education.

What makes people with intellectual disability different is the way they are treated by other people. It would be good for students with intellectual disability to be accepted and treated with respect like other students are. People may have a different way of learning, and it would be good if this was recognised.

**Author Contributions:** Conceptualization, R.H. and S.R.; methodology, S.R.; validation, R.H. and S.R.; formal analysis, R.H. and S.R.; writing—original draft preparation, R.H.; writing—review and editing, S.R.; supervision, S.R.; project administration, S.R. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding.

**Data Availability Statement:** The data presented in this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

**Acknowledgments:** I wish to thank all the tutors who have guided me and welcomed me into their classes and the mentors who helped me feel safe at university. I will be forever grateful for what they have done for me in supporting me all the way through my university experience. I would like to acknowledge the support of my mother, Miriam, who has guided me through this whole big part of my life. Thanks Mum. Thanks to Kathryn Mills and Stephen Sheehan for research assistance.

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **References**


### *Article* **How Being a Researcher Impacted My Life**

**Alix Herer <sup>1</sup> and Ariel E. Schwartz 2,\***


**Abstract:** Doing research can help people to learn about a lot of different topics. For example, researchers can learn how to work in a group, collect and analyze data, how to make accessible materials, and get to know their own strengths. In this paper, a researcher shares what she learned while working on two research projects about young adults with intellectual/developmental disabilities and co-occurring mental health conditions. The first project was peer mentoring. In this project, we focused on individual needs for someone who may be struggling with mental health. The second project was about workplace disclosure. In this project, we tried to find out if young adults disclose their mental health conditions at work and in job interviews. We explain how we did the projects, how the researcher learned to do research, and what made it easy to learn. We also share about the impact of doing research on the researcher's personal life. Finally, we share why doing inclusive research is important and how to help researchers with disabilities feel like they are valued members of the research team.

**Keywords:** inclusive research; participatory research; intellectual disability; developmental disability; mental health

#### **1. Introduction**

This paper is about the experience of a co-researcher with a disability doing research. She worked on research with Ariel since 2018. Alix shares her experience on two different projects and why doing research is important to her. We wrote the paper together. Ariel wrote questions for Alix to answer on her own. Then, they met together to talk about what Alix wrote, make edits, and add more details. Usually when they met, Ariel typed everything that Alix said. Then, Ariel looked at everything Alix wrote, organized it, and got Alix's feedback to make sure she did not change the meaning.

We decided that it was not important to write about how to do inclusive research or why inclusive research helps make research better from the perspective of Ariel. Many researchers have already written about this (e.g., Frankena et al. 2019; Schwartz et al. 2020a; Stack and McDonald 2014; Walmsley et al. 2018), especially from the perspective of academics (Strnadová and Walmsley 2018). Alix felt it was very important to write this paper because often papers are written by people without disabilities. This paper is special because it is written by someone with real-life experience explaining how she did the research, which has been done by few other people. While some teams have written together (for a review on this topic, see Strnadová and Walmsley 2018), we only identified one article where an individual co-researcher took the lead in the full manuscript (White and Morgan 2012). Other times, teams of co-researchers wrote about their research process and their experiences (e.g., Abell et al. 2007; Cook et al. 2021; Williams et al. 2005). However, these examples are limited, due to the many challenges of publishing inclusively in academic journals (Riches et al. 2020). In this paper, Alix shares her experiences, what helped her to conduct research, how research impacted her life, why *she* thinks it was important that she was involved, and how she felt as an important member of the research team.

**Citation:** Herer, Alix, and Ariel E. Schwartz. 2022. How Being a Researcher Impacted My Life. *Social Sciences* 11: 127. https://doi.org/ 10.3390/socsci11030127

Academic Editor: Patricia O'Brien

Received: 15 December 2021 Accepted: 8 March 2022 Published: 15 March 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

#### **2. Study 1: Peer Mentoring**

#### *2.1. What the Study Was about and What I Did*

The peer mentoring study was about a program for individuals with intellectual/ developmental disabilities and mental health challenges. In peer mentoring, mentees met with mentors who taught coping strategies and the skills they can utilize in their day-today life. We individualized each mentee's plans and activities, so they all reached their own goals.

First, we had to make peer mentoring (Schwartz et al. 2020b). Second, we were peer mentors. Third, we looked at data to find out if the mentoring helped our mentees (Schwartz and Levin 2021).

#### 2.1.1. Making the Peer Mentoring Program

Before mentoring happened, we had to learn how to mentor someone like us. We met at Boston University once a week. I worked with three other researchers with disabilities. They all went to the same transition program that I went to. That was cool, because we all knew each other, and I did not have to learn about new people. It was also cool that we were able to work with Boston University graduate students who were around my same age.

Ariel made the activities and the mentoring script. I helped to give feedback on what to keep and what not to keep. We worked together by looking at PowerPoints. We said what pictures and words should or should not be in the peer mentoring materials. We tried the activities before we mentored and gave feedback. I joined afterward, but I know we also did focus groups with young adults all around Massachusetts to see if they liked the peer mentoring activities. Before peer mentoring started, we also made videos about mental health to show the mentees. That was really fun!

When we were making mentoring, it was helpful to have interactive activities, like the PowerPoints. I am a very visual person, so the pictures were helpful. It was also helpful that the other researchers broke down the information into small parts. There were a few confusing moments, but the people at Boston University explained everything well, and I figured it out. The graduate students were really helpful. They helped with activities and hung out and talked with us. They also helped me enter my work hours.

#### 2.1.2. Being a Peer Mentor

I had two mentees who I met once a week at their house or school. Other mentors met with their mentees at other places in the community, like libraries or coffee shops. When we first met our mentees, we went over how mentoring would happen. We explained what we would do if something went wrong. We worked on a contract together that we all agreed on. We did lots of activities. During our sessions, I taught them lessons about mental health by doing a worksheet, an activity, or showing a video we made. Some of these activities were a body scan, barriers and support worksheet, and mood logs (Figure 1).

Our goal was to pick two coping strategies with the mentee. We determined what coping strategies our mentee would work on by doing a card sort. The card sort also helped us to find out what their interests were. Examples of coping strategies from my mentees included making origami, a coloring book, or going to the park. After they picked their strategies, we helped them to work on their coping strategy and discussed any worries or concerns they were having. Each week, I also checked in with my mentee by a phone call, text or email about how they were doing.

To help me to be a better mentor, I had a supporter who I talked to weekly about the week's mentoring session. We talked about the script and the activities I would do. Sometimes if the mentoring script was confusing, we would edit it to make it better.

During the peer mentoring group, before we even started meeting with mentees, we talked about what to do in an emergency situation. We had a texting system. We would text a stop sign to our supporter if there was an emergency. We would text a yield sign if there was something I needed to tell my supporter later. I never had to use the stop sign,

but it was there just in case. I thought the texting system was good, and it was helpful that Ariel worked near one of my mentees. Once, when I had a problem, she came running over to help. there was something I needed to tell my supporter later. I never had to use the stop sign, but it was there just in case. I thought the texting system was good, and it was helpful that Ariel worked near one of my mentees. Once, when I had a problem, she came running over to help.

To help me to be a better mentor, I had a supporter who I talked to weekly about the week's mentoring session. We talked about the script and the activities I would do. Some-

During the peer mentoring group, before we even started meeting with mentees, we talked about what to do in an emergency situation. We had a texting system. We would text a stop sign to our supporter if there was an emergency. We would text a yield sign if

times if the mentoring script was confusing, we would edit it to make it better.

*Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 3 of 11

**Figure 1.** Example of peer mentoring activities.

**Figure 1.** Example of peer mentoring activities. 2.1.3. Looking at Data to Find Out If Mentoring Helped Our Mentees

2.2.3. Looking at Data to Find Out If Mentoring Helped Our Mentees After mentoring, we looked at the data. The data included interviews with the mentees and their parents and surveys about mental health symptoms that the mentees and their parents filled out. To analyze the data, we made charts on what the mentees and their family had said. For example, when the research team met at Boston University, we did an activity where we got a bag of quotes showing what people liked and did not like. We worked together with a partner and got help from Ariel and the graduate students to sort quotes from the mentees into categories and glued the quotes on paper (Figure 2). One group worked on positive things about mentoring and another group worked on negative things about mentoring. We presented the charts to each other. Then, we talked about what they liked and did not like as the research team so we could know what to After mentoring, we looked at the data. The data included interviews with the mentees and their parents and surveys about mental health symptoms that the mentees and their parents filled out. To analyze the data, we made charts on what the mentees and their family had said. For example, when the research team met at Boston University, we did an activity where we got a bag of quotes showing what people liked and did not like. We worked together with a partner and got help from Ariel and the graduate students to sort quotes from the mentees into categories and glued the quotes on paper (Figure 2). One group worked on positive things about mentoring and another group worked on negative things about mentoring. We presented the charts to each other. Then, we talked about what they liked and did not like as the research team so we could know what to change. When I was looking at the data, I kept thinking back to my actual mentoring sessions. I could remember what my mentee did and how some of the data matched my experiences. I would ask questions if other people had similar experiences during mentoring. This helped me understand the information more.

change. When I was looking at the data, I kept thinking back to my actual mentoring sessions. I could remember what my mentee did and how some of the data matched my experiences. I would ask questions if other people had similar experiences during men-

We also looked at graphs of the survey data that Ariel made to see if there were changes in their mental health symptoms after mentoring (Figure 3). If I had seen the graphs before I mentored, I would not have understood them as well, because I like to understand things by doing them. When Ariel showed us the graphs, she reminded us of the training we did that related to the different topics in the graphs and how we worked

change. When I was looking at the data, I kept thinking back to my actual mentoring sessions. I could remember what my mentee did and how some of the data matched my experiences. I would ask questions if other people had similar experiences during men-

toring. This helped me understand the information more.

*Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 4 of 11

on mental health symptoms in mentoring.

**Figure 2.** Example of the qualitative analysis of feedback about peer mentoring. **Figure 2.** Example of the qualitative analysis of feedback about peer mentoring.

We also looked at graphs of the survey data that Ariel made to see if there were changes in their mental health symptoms after mentoring (Figure 3). If I had seen the graphs before I mentored, I would not have understood them as well, because I like to understand things by doing them. When Ariel showed us the graphs, she reminded us of the training we did that related to the different topics in the graphs and how we worked on mental health symptoms in mentoring. **Figure 2.** Example of the qualitative analysis of feedback about peer mentoring.

**Figure 3.** Example of an analysis graph. **Figure 3.** Example of an analysis graph.

We talked about making changes to peer mentoring based on the data and what we remembered did and did not work while we were mentors. For example, a couple people said they were getting bored with the barriers and supports worksheet and that it took too long (Table 1). So, we made it into a card sort to make it more fun. We are planning on doing peer mentoring again. Because of the COVID-19 pandemic, we will be doing it virtually and we can have mentors and mentees from outside of Massachusetts. We talked about making changes to peer mentoring based on the data and what we remembered did and did not work while we were mentors. For example, a couple people said they were getting bored with the barriers and supports worksheet and that it took too long (Table 1). So, we made it into a card sort to make it more fun. We are planning on doing peer mentoring again. Because of the COVID-19 pandemic, we will be doing it virtually and we can have mentors and mentees from outside of Massachusetts.

**What Mentees Liked about Mentoring What Mentees Wanted to Change about Mentoring** • "[My favorite part was] spending time with Alix and making good conversations . . . she was very calm and relaxed, and she wasn't worried and stuff . . . we had stuff in common . . . she was a very good person. [She made me feel comfortable because] she wasn't yelling, 'cause I don't like yelling . . . she was very understanding". • "[Alix] is funny!" • "My favorite one is going to coffee . . . it was a lot of fun". • "The drawing book is a lot of fun to make". • "I like that [my mentor] is not an ablest person. Because some mental health providers they think that helping people and hurting people are the same thing . . . . And that's an awful thing to have experience with and they can just be terrible and [my mentor] was not like that . . . And I think him also being autistic make him more • "Maybe talking more about myself . . . stuff that's on my mind" • "Practicing the coping strategies . . . I think it might be good if we did it more often." • "Spend more time" • "Maybe, a little bit more obscure knowledge . . . instead of trying to teach you about mental health, which you no doubt already know if you are at my age, you already know about it because you grew up around it . . . teaching you how to, take responsibility for yourself, like learn about your rights, as someone who has problems with mental health, things like that".

**Table 1.** Selected quotes about peer mentoring.

#### *2.2. What I Learned from Peer Mentoring*

qualified to understand".

In the mentoring project, I learned how to work on a research team. I learned that giving an idea is good. I also learned time management, because if you have a meeting with a mentee you have to be on time. I set alarms on my phone and I made sure I had a ride. Peer mentoring helped me a lot with communication with other people. I opened up to talk with other professionals, like my mentee's school counselor, people at a conference, and someone from another university who asked us to make a podcast (Boston University Mentoring and Research Team 2020).

Mentoring helped me have conversations with people in my personal life. I struggle making friends, because sometimes I do not know how to start a conversation, and this program really helped me with suggesting ideas about how to talk to people. It also helped me to learn cues, like if someone does not want to talk to you, because we talked a lot about how to communicate with the mentees.

*I also learned about other people. For example, boundaries are important. If someone is having a hard time, you want to give them space, and then ask again. Mentoring also helped me learn how to give other people a chance to talk. Sometimes, I get really excited about sharing my ideas. I learned to hold back and give someone else a chance.*

#### *2.3. Why It Was Important That I Was Involved*

People with disabilities have so many more strengths than they have challenges. Giving someone the opportunity to mentor someone just like them is a good idea because they understand where they are coming from. That person comes from experience not by going to school and getting a degree, but because of their own life experience. I personally feel we need more mentors like me because I have an understanding that cannot be taught in a classroom. I feel I have a connection with my mentees and we probably have had the same struggles. In some ways, we speak the same language. I feel I can truly understand what the mentees are talking about and understand their experiences.

It is important that young people with disabilities helped make the peer mentoring program, instead of just adult researchers without disabilities, because as a person with a disability, I understand their daily struggles. When I was growing up, I needed a lot of support, academically and emotionally. I really looked up to people who helped me, and I thought it was super important. I really wanted to give back to someone who was struggling just like I was.

#### **3. Disclosure Project**

#### *3.1. What the Study Was about and What I Did*

Our research was to learn more about the experiences that young adults with intellectual/developmental disabilities and co-occurring mental health conditions have at work. We wanted to know if they are receiving accommodations they need in the workplace. We also wanted to see what they were having challenges with at work. A big part of this study was learning about disclosure. Disclosure is when you tell someone about your disability. We wanted to know if people disclose their mental health conditions at work, and if they do, how they did it (Interview with Boston University Research Team 2021; Schwartz et al. 2022). In this project we interviewed 12 young adults with intellectual/developmental disabilities and mental health conditions to find out how they disclosed at work and to hear their stories.

To conduct the research, we worked as a team. I was really lucky to work with an amazing team of researchers who helped me every step of the way. They gave advice about what to say during the interviews. We collaborated and shared our ideas as a group. There were three researchers on this team that had an intellectual/developmental disability and mental health conditions. Ariel, who was working at Boston University, was also part of the team. We met every couple of weeks on Zoom. We created the questions that we were going to ask to the participants and also made a survey about accommodations and how mental health impacted young adults at work. We came up with the questions for the survey and response options. We had some ideas for the survey that Ariel said she never would have thought of without us. One of those ideas was to have really specific response options on the survey that would give us more information about accommodations (Figure 4). *Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 7 of 11

After we interviewed all of the young adults, we analyzed the data by looking at Jamboard to help us to understand it completely. Ariel read the hundreds of pages from the focus groups and interviews and found quotes about different topics. Some examples

into categories based on the main idea in the quote. Then, we either made more categories

**Figure 5.** Example of the qualitative analysis using Jamboard. Quotes are in yellow; co-researcher's

or changed the name of the category to help us to understand the data (Figure 5).

**Figure 4.** Response options developed by the team*.* **Figure 4.** Response options developed by the team.

"main idea" labels are in green and pink.

For the interviews, we put all the questions on a Google Slideshow that we shared. When we were interviewing a young adult, there was one researcher and Ariel in the interview. We took turns asking questions and listening to their stories. Ariel would change the color of the question once we were done getting the information we needed. If we needed more information, Ariel privately chatted suggestions for another question to ask, or reminded us about "who", "why", or "how" questions. We had different topics on each slide to make sure that we were asking the correct question. I thought it was really helpful that each slide had a few questions. The Google Slides were on a screen that only me and Ariel could see. We audio recorded all of the interviews and graduate students at Boston University transcribed everything the participants said so we would have all the data. Ariel had also talked to job coaches and transition specialists in focus groups and recorded what they said. We also analyzed that data. We spent a long time gathering the data! **Figure 4.** Response options developed by the team*.*

*Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 7 of 11

After we interviewed all of the young adults, we analyzed the data by looking at Jamboard to help us to understand it completely. Ariel read the hundreds of pages from the focus groups and interviews and found quotes about different topics. Some examples of the topics are: accommodations, how people disclose, and what happened when people disclosed. She put the quotes on post-it notes in Jamboard. We moved the post-it notes into categories based on the main idea in the quote. Then, we either made more categories or changed the name of the category to help us to understand the data (Figure 5). After we interviewed all of the young adults, we analyzed the data by looking at Jamboard to help us to understand it completely. Ariel read the hundreds of pages from the focus groups and interviews and found quotes about different topics. Some examples of the topics are: accommodations, how people disclose, and what happened when people disclosed. She put the quotes on post-it notes in Jamboard. We moved the post-it notes into categories based on the main idea in the quote. Then, we either made more categories or changed the name of the category to help us to understand the data (Figure 5).

I really liked this project because I enjoy listening to other people's stories and trying to help them as much as I can. It was interesting to me, because I could relate to some young adults and what they shared.

#### *3.2. What I Learned from the Disclosure Project*

In the disclosure project, I learned a lot about the different jobs young adults had. I learned how they disclosed at work. After doing data analysis I really understood what some people were going through at work and what support they were getting and not getting. I personally think that, if you struggle with something, someone should know about it, so you do not go to a job and have to struggle. This does not mean you have to disclose a disability, but you can ask for help.

#### *3.3. Why It Was Important I Was Part of This Project*

We are coming from the experience of having a disability. The things that we were researching and talking about are our real-life experiences. I felt like I could relate to some of the concerns the participants were having. During some interviews, after a young adult told us a story about what happened at work, I could say, "that happened to me". That might have made them feel like they are not the only one. As a researcher with a disability, I have been through so many job trainings and have spoken to so many professionals about work that it came naturally to me. This also helped me to come up with interview and survey questions. I felt like I could bring a lot of good ideas that might help other young adults with disabilities. I would be curious if a team of researchers without disabilities found the same things.

#### **4. How Research Impacted My Life**

Research positively impacted my life. I really liked being a researcher because I have always wanted to help people, and this gave me an opportunity to do that. I really enjoyed listening to the stories the young adults had in the interviews for the disclosure project. It makes me feel happy when other young adults share stories with me because, sometimes, I can relate to them. I also was able to learn about my own strengths and be more confident.

I learned things that helped me in my own life. For example, in peer mentoring, I learned more about communication, and in the disclosure project, I learned about accommodations I could have asked for. I also learned about how to teach other people about coping strategies and mental health. Both studies helped me to learn how to organize information when we made charts or put information in a PowerPoint.

Doing research helped me realize how many strengths I have. For example, I realized that I have strengths in communication, being professional, and listening to what someone is saying. I am very creative. I got to use my creativity by sharing ideas. For example, I gave ideas of what we should put in the video we made about peer mentoring. I also gave ideas about how to improve peer mentoring activities. One idea was making the body scan on the computer instead of on paper.

I also was able to use my communication skills. When I am talking to someone, I always want them to feel that they are heard and that I am acknowledging what they say. For example, when someone tells me a personal story, I say, "thank you so much for sharing that. I know that can be really hard". This was really helpful in research because some of the topics that we were talking about could be sensitive and hard to talk about.

Doing research helped me think of new options for myself. I learned more about helping people instead of being the person who got help. It is very different. Research helped me see that I am a good advocate for young adults with disabilities and that advocating is something I really like to do. When I learned new skills, I felt like I could be a leader. Ariel taught us the skills to lead a mentoring session. To prepare to lead, we looked at PowerPoints and did hands-on activities, such as role plays. These activities helped me understand it right away. I felt like I was the leader when I was mentoring because I was the person teaching.

This job helped me get other jobs. I used to work in food service. Then, I started the mentoring project, and I realized that I was really passionate about working with people with disabilities and mental health conditions. I looked for a job working with people. It took a long time, and that led to some mental health struggles, because I had jobs I did not like. The mentoring program opened a lot of doors for my career. Mentoring gave me the experience I needed. I also asked Ariel to tell my job coach and other people that I could work with kids and teens really well. Now, I am a preschool teacher.

#### **5. How Researchers without Disabilities Can Help Researchers with Disabilities Feel Welcome**

Researchers without a disability can make researchers with a disability feel welcome by listening to their ideas, supporting their ideas, and including them in group decisions. Ariel and the other people helped me to feel like I belonged when they listened to my ideas and supported me if I did not understand something. They also used visuals, which helped me a lot. Another way that helped me understand the data was working in small groups. Ariel really broke the data down and explained it to us in a way that we understood. That structure helped me understand it better.

Now that we have worked together for three years, I feel even more comfortable sharing my ideas. I also felt as if I belonged, because other people on the team had disabilities. I could relate to what we were talking about, and I knew how it felt from my own personal experience. I had real life experiences, so I had a lot to say. People can read books about people with disabilities, or watch videos, and do so much research, but the experts are the people that experience disability in their own personal life.

#### **6. Conclusions**

As a researcher, working on these projects, I felt it was really unique, because I was able to promote and develop the research, and usually people with disabilities do not do things like that. Being a researcher was a very important experience for me. I always knew I wanted to help people, but I did not know what type of people I wanted to help. These experiences helped me learn I wanted to help people with disabilities, just like people helped me when I was younger. Doing research helped me open up about what I think is important and I learned many skills, just like the other co-researchers also learned many skills in their research (e.g., McDonald and Stack 2016; Strnadova et al. 2014; White and Morgan 2012).

As I was working on the research team, I contributed all of my strengths to the group and was an advocate for the things that I felt were important for people like me. Because Ariel designed the research to play to my strengths and understood how important my life experience was, it made it easy to contribute. In this group I felt comfortable sharing my ideas, because Ariel always gave my ideas a try (Milner and Frawley 2018; Schwartz et al. 2020a). After many years of working on the research, I have gained a lot of skills and strengths and learned new information about how to help somebody like me. The longer I do research, the better I become at it and the more I see how I have made a difference in the projects (Kidd et al. 2018). I am very excited to keep working on the projects and making a difference in somebody else's life. It is one of my passions.

**Author Contributions:** Conceptualization, A.H. and A.E.S.; writing—original draft preparation, review, and editing, A.H. and A.E.S.; funding acquisition, A.E.S. While research described was completed with A.E.S. was at Boston University, conceptualization and writing of this manuscript occurred while she held a position at the MGH Institute of Health Professions. All authors have read and agreed to the published version of the manuscript.

**Funding:** While the team had no funding to support the writing of this manuscript, the studies Alix described were funded by grants to Ariel Schwartz. Peer mentoring study: Deborah Munroe Noonan Memorial Research Foundation & American Academy for Cerebral Palsy and Developmental Medicine Research Grant. Disclosure study: Analyzing Relationships between Disability, Rehabilitation and Work Small Grant Program; Society Security Administration and Policy Research, Inc.

**Institutional Review Board Statement:** The studies described were conducted in accordance with the Declaration of Helsinki, and approved by the Institutional Review Board at Boston University (Protocol 4903E, approved 10 August 2018 and Protocol 5658E, approved 21 August 2020).

**Informed Consent Statement:** Informed consent was obtained from all participants involved in the described studies.

**Data Availability Statement:** Not applicable.

**Acknowledgments:** Thank you to everyone on our research team for being great teammates. Thank you to all the participants who were involved in helping to answer our research questions. In addition, we would like to thank the graduate students from Boston University who helped us with our research.

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **References**

