Reflecting on my Disabilities from a Place of Reignited Pride

The blog title “Reflecting on my Disabilities from a Place of Reignited Pride” on a blue background with a orange border. Below the title is a circle with a fire icon with orange, yellow, and red.

As it is Disability Pride Month, I thought I would reflect on my disabilities and my experiences so far living with them. I considered myself as deaf and disabled. This is because I have a profound-severe hearing loss (which means I can hear almost nothing, well, nothing useful) and I have chronic nerve pain that is usually just pain but has affected my mobility and coordination when it is bad. The fun part about living with my disabilities is that each disability has conflicting needs. What I mean is what I typically need for my hearing loss, my chronic pain does not like and what I need for my chronic pain, well, being unable to hear and wearing devices has its challenges. Having to deal with both disabilities for 7 years, balance is key so far.

My experiences with my disabilities are interesting. I have been deaf my entire life with my hearing loss being the same level since I was four to five years old. So, living with a disability has been my reality for as long as I can remember. To me, asking for accommodations and accommodating my non-disabled family members, friends, colleagues, teachers, and peers is second nature to me. I am used to disclosing my disability, asking for help, and advocating for myself. I honestly cannot remember when I did not except for the times when I felt like the battle was not worth it. So being deaf my entire life, having a disability is not a bad thing, it is part of who I am.

Then my chronic nerve pain stabbed me in the head. Suddenly, I have an experience that really sucks to live with. Being in pain constantly is not something I wish on anyone. I then have to consider my energy, understanding that I really cannot do some things, and wondering if I can even survive the day meeting basic needs. This is where I can see from the perspective of someone who gained a disability later in life and suddenly could not do the things they used to do or live the life that they had. Now I am at a place where I am managing it and I regain some of my mobility, coordination, and energy back but not without awareness and sacrifice to meet my disabilities.

It will always be a work in progress. Things will change, more experiences will be learned, and I will adapt accordingly. But, I do recognize that being deaf my entire life and having the experience that living with a disability is not a bad thing allowed me to handle the transition of dealing with the chronic pain a little better. So I wanted to highlight what I have learned over the years.

There will be highs and lows of living with a disability. There will be days when you have no issues, your assistive devices are working and your accommodations are met. But, there will be days where the demands that are put on disabled people in society are too much. There is something great about a regular day where it is good with some challenges when your entire life is filled with highs and lows.

The difference between treatment of disability from childhood to adulthood still shocks me to this day. There are all these services and supports available in childhood, especially when diagnosed and in the public school system. Then you graduate and it is time to be an adult with the same disability and/or more disabilities and the services and supports are limited, confusing, and inconsistent. Permanent disability does not take a break between the ages of 18 and 65.

Lastly, it is exhausting but not always in the way people think it is. People think it is exhausting due to the disability itself. While there are likely extra steps and considerations, most of the exhaustion is accommodating non-disabled people due to our own disabilities. For example, I lip-read to make other people's lives easier, it is not easy for me. It never was and it is exhausting. Accommodating due to stigma, biases, and the unwillingness to provide accommodations (or make spaces accessible) is usually the exhausting part.

Amanda