Disability Identity- How I've Connected Or Distanced From Disability In Life

Happy Autism Acceptance Month! Autism acceptance day was on April 2nd, and I want to share how my disability identity has changed as I've aged. As I have been working on my thesis, I have been thinking about my relationship with my disability identity. I am proud to be disabled and enjoy using academic and advocacy spaces to share my experiences, add to academic conversations, and add nuances to specific conversations about disability. When thinking about how this passion grew throughout my childhood, I remember times when I was not always this open or proud of my disability identity. This week, I want to walk you through different phases of my life and describe where my disability identity was at the time. I will then end with some notes about self-advocacy and disability pride.

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1: Early Childhood

When I was a kid, disability identity was never hidden from me. I don't remember being told I had autism; I just had it. I was able to access all the services I needed, and was never told by my parents to hide my disability. My autism was never framed as weird, shameful, or bad, even when I would do things like pretend to be a cat instead of talking. I believe the framing of my disability in this way has played a role in my confidence in taking up space as a disabled woman today.

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2: Elementary School

Once I was old enough to know about having autism, it just was. I had friends, but I was never popular. I attended therapy and would get feedback on socialization techniques, but they were either bad (looking back now, I believe this therapist was not good at working with autistic children) or I was not able to easily implement the techniques for whatever reason. However, I did have a small group of friends in elementary school, and I am still friends with one of those people today. My disability identity was not bad, but I was about as aware as a young child could be.

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3: Middle School

By the time I got to middle school, I suddenly became aware that there were things about me that were different in a way that made it hard to make and keep friends. I had shame about it, but I didn't know what to do. Suddenly my autism (back then Aspergers Syndrome) was something I barely had, and my classroom notes to meet with a speech therapist or special education teacher for IEP notes was something I tried to hide. I framed my worth through my ability to get work done quickly, have mostly A's, and overall focused on my usefulness rather than my personality. Unfortunately, throughout my time in middle school, I did all I could to hide my disability and try to be normal. Spoiler alert- I have never been normal.

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4: High School

I maintained my viewpoint on my disability identity in high school until sophomore year, when I was suddenly hospitalized and diagnosed with hereditary spastic paraplegia. The first thing I did was text a bunch of people to prove that my inability to complete any athletic sport even slightly well ever was now justified. The second thing I did was sit with this scary new diagnosis. Suddenly, I lived at the doctor's office, was tired all the time, and found that school systems were not designed for disabled students. This diagnosis is what largely led to my disability advocacy because I made a lot of improvements, and I think I made some of my teachers aware of how hard it is to manage academics while also being pulled out on average every week, having less energy to manage the appointments I left school for before my shortened schedule, completing all of my homework, and attempting to have a social life. I was proud of what I was able to achieve, and wanted others to be aware that disabled people, especially disabled young people, exist out in the world and aren't faking it.

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5: Undergrad

In my undergrad degree, I learned I could use academic methodologies to learn about disability as it related to my other classes and my communications major. However, dating at the time was new for me, and I was not upfront about having a disability right away. Now that I am single again, this is something I will have to navigate. However, I was upfront with family, friends, professors, and classmates as relevant and found that I had a lot to say. In my senior year of college, I joined the student senate as a disability advocate in the social justice position. This role ultimately led to me learning more about disability research through a committee role that my thesis advisor was also on.

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6: Grad School

In my gap year, I started this blog and started working on academic research, which I am currently still editing. Once I started grad school, I used those interests to fuel my research questions and final projects. My thesis is also influenced by my passion for self-advocacy and using my experiences to open conversations. I have spoken at seminars and professional development days, and I use my experiences in class to start conversations about disability accessibility. I now feel more confident in my ability to advocate, and my passion for disability accessibility and acceptance.

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I want to use this experience to say that it is okay to not always have positive feelings about a disability diagnosis. Disability identity can be complex and nuanced. To end this blog, I want to share some advice for navigating your own disability identity or supporting someone else.

1: It's okay to have conflicting feelings about a disability diagnosis

Getting a new disability diagnosis can be a lot to process. It is okay to not have positive feelings about a disability all the time. By making space for all the feelings, it can allow for a better relationship overall.

2: Disability presentation can change, which can impact disability identity

I went from being in a wheelchair 50% of the time in high school to being able to walk 99% of the time now. This change has impacted how I view myself as someone with a physical disability. It is important to make space to process these changes because, as we age, try new treatments, or change medications, our symptoms will change accordingly. Similar to my advice for my first point, make sure to periodically take inventory of where you are and make space for any feelings that come up.

3: Community can help foster pride and help with feelings of isolation

I have found that once I started having disability community, my mental health improved. Community for me includes other disabled people, family and friends who are supportive of my disability identity, and professional spaces that make room for my disability accommodations. All of these things make my life easier, and play a role in my mental health being better.

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Thank you for reading about my experience with disability identity throughout my life. If you have any questions or comments, please comment on the blog, reach out at @Anniekrollblog on Instagram or Facebook, or email me at Anniekrollblog@gmail.com. I hope to see you next week!