Disability Pride: Grief and Acceptance

What does disability mean? What do you picture when you hear the word disability? Maybe you’re envisioning a person in a wheelchair, the literal symbol of disability that’s plastered on parking spots and bathroom doors. Hopefully though, most of you understand that disabilities exist far beyond what we can see. Disability is broader than what most people think, it can be physical or mental, visible or invisible. July is Disability Pride Month, where we celebrate “disabled persons embracing their disabilities as integral parts of who they are, reclaiming visibility in public and interacting fully with their disabilities out in the open, and rejecting shame and internalized ableism.” ^[1] Originally Disability Pride Month began as a day of celebration in Boston in 1990, which was the year that the Americans with Disabilities Act (ADA) was signed into law. The first official celebration of Disability Pride Month occurred on the 25^th anniversary of the ADA in July 2015. Today, there are Disability Pride Month celebrations across the country.

Up to 1 in 4 (26% or 61 million) adults in the United States have some type of disability.^[2] Yet, the stigma surrounding disabilities persists. As I stated earlier, disabilities aren’t always immediately apparent, or even visible, to others. Apparent disabilities can sometimes be accepted or normalized in certain settings while nonapparent disabilities can be stigmatized, sometimes questioning the validity of the disability. At least 20% of all disabilities are nonapparent.^[3] I have type 1 diabetes, it’s usually an invisible and non-stereotypical disability. Type 1 diabetes is an autoimmune disease, which means that my immune system mistakenly attacked my own body, specifically the insulin producing cells in my pancreas so now my pancreas produces little to no insulin. Insulin is very important and not having any can cause life-threatening complications. There is no cure yet, the lifelong treatment is taking insulin through daily injections or through an insulin pump. For a long time, I did not consider myself disabled. I felt that I wasn’t “disabled enough” to call myself disabled and I also wanted to skirt the stigma surrounding disabilities. I spent so long going through life with the mindset that my diabetes wasn’t going to slow me down so identifying as disabled wasn’t necessary. But the truth is that it did slow me down sometimes. Having a chronic illness is exhausting and it’s always there. And identifying as disabled isn’t a bad thing.

Disability or disabled are not bad words. Having a disability, being disabled is just a common form of human variation. It is a part of who you are, and Disability Pride Month is about reclaiming and improving your self-esteem and well-being. “Disability pride has been described as accepting and honoring each person’s uniqueness and seeing it as a natural and beautiful part of human diversity.” ^[1] But it isn’t easy, there are many external factors to consider as well, such as ableism and accessibility issues. Ableism is discrimination against people with disabilities in favor of able-bodied individuals. It is damaging, segregating, and can prevent individuals with disabilities from fully participating in society. When we fail to create spaces inclusively to support the full range of human identity and ability, we perpetuate ableism. People with disabilities should be able to acquire the same information, engage in the same interactions, and enjoy the same services and benefits as a person without a disability in an equally effective and efficient manner. Accessibility is our shared responsibility, and if we all play a part in the way we think about accessibility, we can together create a more inclusive and accessible world.

However, even without dealing with ableism and accessibility issues, coming to terms with your disability is still challenging. My disability is a chronic condition and that’s the hard part, that it’s chronic. It never ends. It never leaves, it never goes away. And it can be difficult to come to terms with that. Like anyone else, I have good days and bad days. The difference is that even on those bad days I’m still a person with type 1 diabetes and I still must manage my diabetes. Every day, good or bad, rain or shine, I have to check my blood sugar and give myself insulin. And even when I do everything “right” my blood sugar may not be in range, and I just have to adapt. Honestly, sometimes it can feel pointless to take care of a body that won’t do what it was made to do. It sucks and it’s not fair. And I think it’s important to remember that these feelings are normal to have. You don’t have to force yourself to be positive when you’re hurting. I know that society tends to either pity disabled people or see them as “inspirational,” which isn’t helpful. I can’t even count how many well-intentioned relatives have told me inspiring stories about disabled people and used that to tell me that I can do anything I want. Or tell me that I should be grateful because things could be worse. The fact is people with disabilities don’t need to be exceptional or inspirational, they can be, but they don’t need to be. Honestly, sometimes simply getting through the day can be hard enough. And it’s okay if you can’t do the same things you used to, or if it’s harder now than it used to be. It’s okay to grieve the future you thought you’d have but illness and disability robbed from you.

I think that grieving the future you thought you’d have and grieving the person you used to be is a normal and healthy thing to do. But with grieving, there must come acceptance. And I’m hopeful that people will go beyond simply accepting their disability and will have pride in it. Remember, “disability pride” doesn’t mean we have to like our disabilities all the time, or that we have to ignore the difficulties and sometimes suffering that comes with them. Disability pride is about taking pride in your whole self, which includes your disability. It means that you understand your limitations, including chronic pain or illness, but accept and love who you are. Disabled people are often framed by society as pitiable or helpless. This view damages our confidence and self- esteem, especially since ableism is so prevalent. Not to mention, feeling embarrassment and ashamed of our disabilities isn’t just emotionally distressing, but it is exhausting. I know that I have spent way too much time and energy trying to hide myself, while simultaneously trying to convince people that I am worthy of equity and inclusion. So, this Disability Pride Month, please be proud of yourself. Be proud of how far you’ve come and what you’ve accomplished, even if it doesn’t seem like much. It is important. And, stop thinking in terms of “in spite of.” Remember your disabilities are a part of you, so they have also contributed to your successes.

Happy Disability Pride Month!

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