Disability Pride Series: Pity

When I am with my family and we pass someone using a wheelchair the overall reaction is pity. I can tell. They make that “tutting” sound or say something like “aren’t we lucky to be able to walk to the restaurant!” or “I should never complain again, some people have it so hard!” You know, the usual.

I used to feel pity too. Then I realized that that pity is unnecessary. And condescending. And shows a lack of understanding of how people can live in diverse ways. Actually it was videos from Shane Burcaw (https://www.youtube.com/c/SquirmyandGrubs) many years ago that first made me think. He explained it so well. And from his videos I could see that he was living a fulfilling and happy and not miserable life.

As I became familiar with the disability community online and on social media they were able to educate me about how mobility aids aren’t something to be sad about, for example. That people who can use wheelchairs use them to get around and do the things they want to do. In fact they are a way to be free. The same applies for so many other devices that many people in society associate with having a “sad” life or being deprived of “fun” things.

Now that my own mobility is more limited, I try to remind myself of these things. Because even when it is about yourself (maybe especially when it is) you can easily absorb that pity from others and start to feel self-pity. Self-pity is almost an antagonist to Pride, and since July is Disability Pride Month, I am trying to be free of my self-pitying thoughts as much as possible. It can be difficult when people around you very clearly feel sorry for you, or express that they do straight to you. My parents don’t hide the fact that they think if I were to get a mobility aid at my age, this would be extremely sad. My father has even cried about this very fact. Of course, they are allowed to grieve for their non-marathon running, non-athlete-of-any-kind- daughter, but only to an extent. After that, I want to show them that I am happy to be able to have something that allows me to travel more independently and that I am not sad about it at all. That it is helpful and why should that be a bad thing?

I can also sense when my peers are pitying me. In fact, this often comes out in quite nasty ways. Like not inviting me places, or not including me in things, or not discussing things with me. I know that to a large extent they do these things because they are frightened of me with a disability. They are scared of taking me somewhere where something might happen, they feel sorry for me if I have to say no because it’s not accessible to me, or they are so scared to upset or “burden” me with “silly” things. I just want to be treated with normal respect and consideration. The kind that I give everyone else regardless of ability. I want to be able to decline something and give an honest reason and then not to be upset and not to upset the host either. To not be seen as too fragile physically or mentally but to be respected when I choose to step back because of it. That might seem a lot to ask, but in reality non-disabled people actually live their life like this every day. Because their being is not something to be pitied and fretted over at every turn.

Treat every individual the way they want to be. Don’t make assumptions about people’s lives based on things you can see on the outside.

Disability Pride Series: For the Future Me’s

I wish that I hadn’t grown up with “disability” being a word attached to so much fear. For a long time I thought it referred to people unfortunate enough to have been born unable to do things I did like run or go to school. I now see that everything I thought disability was was wrong. I now know that it is a broad spectrum encompassing so many beautiful and diverse people with so many different abilities and ways of life.

We need to shout about disabled pride for the future. For the children who might learn about disability and differences in a positive way rather than a negative and frightening one. For the people who will develop disability as young adults or teenagers and not feel ashamed or out of place. So that those children don’t need to fear ignorance and bullying and isolation from others and from themselves. My life would have played out differently if someone had educated my family and friends. If they weren’t still scared to death of the phrase “disability,” I wouldn’t have to keep pretending things were okay when they weren’t. I wouldn’t have to push myself to unbearable physical and mental pain to be what they believed I should be. I could just be me.

I hope that in the future, there will be an even greater openness around help. Medical devices, mobility aids, stim toys, you name it. All the things so many people rely on just to live their lives. Today many people, including myself, feel a sense of shame around these things. I keep them a secret as much as possible. I feel that they are wrong. That I am wrong when I use them. And it shouldn’t be that way. We should celebrate all the different innovations that have made life possible for so many different people and all that they are now able to bring to the world.

Disability Pride Month is important to me for the future me’s. For those girls who might not have to hide their pains and can ask for assistance without shame and without backlash. Young people who are believed by everyone around them and embraced in any alternative ways they have to get by in their world. Whether that be with medicines, wheelchairs, caretakers or anything else. I hope that when those future young people are here, their families are no longer scared of the word “disabled” and accept an open and accessible world for all. I wish for there not to be more me’s soon enough. That they can instead feel loved and in turn love themselves. Proudly.