My Dynamic Disability Story

By Renee Angelo-Mauk, SHRM-CP, PMQ, Director of Operations & Training 

Disability Pride Month honors the anniversary of the Americans with Disabilities Act (ADA) being passed on July 26, 1990. The ADA was landmark legislation that began to reduce societal barriers for disabled individuals. I first became aware of the ADA when I was working in human resources and was accountable for helping managers provide reasonable accommodations for their employees. While my awareness of the ADA grew as I studied to become a certified human resource professional, my deep understanding of the ADA and the experiences of disabled people only came when I transitioned into disability myself. 

Disability can happen to anyone- something I have found myself reminding able bodied people when advocating for my own accommodations. While some people are of course born with disabilities, an accident can happen tomorrow that could drastically change how your body or brain functions, and how you interact with the world (and the world with you). The ADA defines “a person with a disability as someone who has a physical or mental impairment that substantially limits one or more major life activities”. There is no list of disabilities- purposefully, as the protections of the ADA are meant to be broad and cover many. But the acknowledgement of limiting life activities can be difficult for those who transition into disability because of societal ablism and negative, deficit-based views of disabled people. 

I was aware that I was protected by the ADA when I transitioned to college and was getting services because of my Attention Deficit Hyperactivity Disorder (ADHD). I got extra time on tests and was able to take tests alone, outside of the classroom. Because of my own internalized ablism, I never kept up with receiving (or advocating for) services after that first year. I was concerned with how I would be viewed intellectually while receiving accommodations. 

In the past 5 years, my health status changed, and my body was transitioning into physical disability. Because of my own internalized ablism, I was not even sure when to seek healthcare, because of my misguided point of view of when I needed help. In a job transition during the steepest decline of my health, I was deeply anxious asking for accommodations for fear it would be viewed as special treatment. This was of course not in my best interest, and in the process, I suffered greatly and missed opportunities for rest and support. 

As time moved forward, I got better healthcare treatment and learned more about my rights (and the rights of disabled folks everywhere). My physical disability is complicated because it is a dynamic disability. Simply put, a dynamic disability is a fluctuating impairment, so it does not “substantially limit one or more major life activities” every single day. Some days, I can physically move through the day quite easily, and others, it is too painful to get out of bed. You can imagine, this gets quite complicated in my attempt to continue to live the full life I had always lived before. 

No two days are the same, and I am still in the process with my healthcare providers to figure out what I can do every day to hopefully ensure I have more stable days rather than more days full of struggle. The nature of my condition is complicated, without a cure, and it’s hard to navigate my needs with colleagues and friends when I am having a hard time living in my own body. While most people I interact with have been loving and caring, most still struggle with the lack of answers and solutions for my physical struggles. When I let someone know, I am skipping an activity to rest due to my condition, most will encourage that I should “get that rest to feel better”. But what about when rest is not restful or curative? What about when I am just at work or a social event in some pain, trying to have a good time? There are times when I choose to miss an event, to avoid getting stuck somewhere I would not have access to the tools that help me manage my condition. This makes me feel bad, and excluded- mostly because I know my situation is so difficult for those who have never experienced disability to understand. Disabilities of any kind can be quite isolated. 

I’m sharing my story this Disability Pride Month in hopes of building a bridge of understanding between disabled people like me and able-bodied people. No one can predict when you may be a part of my community, and if you care about inclusion and equity, I hope you will become engaged in more understanding. I am also sharing my story this Disability Pride Month because I am proud of myself! I view myself as very successful despite physical hardships, and I own my disability and needs for accommodation. I will continue to speak on and identify myself as disabled, until disability is radically destigmatized and normalized for all. 

For those who are not disabled, I hope this month you will engage with the stories of many disabled people and engage in your own learning and understanding of everything disability- the historical context, the ADA, the current barriers, individual stories- that would be something to be proud of. 

Recommended Reading: 
Demystifying Disability: What to Know, What to Say, and How to Be an Ally 
by Emily Ladau 

Disability Visibility: First-Person Stories from the 21^st Century 
Edited by Alice Wong