Reflecting on Disability Pride Month as a Person With AS

July was Disability Pride Month, which I had never heard of before I was diagnosed with ankylosing spondylitis. Now, I really look forward to it each year. These are my reflections looking back on Disability Pride Month this year.

Ankylosing spondylitis and pride

You might be thinking, “Why would you be proud of having AS?” It’s something I’ve thought about too. To me, Disability Pride Month isn’t about being proud of having anyklosing spondylitis itself. It’s about rejecting any feelings of shame around having AS and how it impacts me. It’s about being proud of all the things I do and achieve despite AS, and how I advocate for myself and my needs.

I spend so much of my time living with AS analyzing what might have caused a flare-up or helped my symptoms. It's a constant cycle of tests, trying new medications and treatments, and seeing different health professionals. The focus is always on how to reduce symptoms and prevent flare ups. I’m always trying my best towards that goal. All of this is important for me and my health.

But Disability Pride can be a breath of fresh air as a person with ankylosing spondylitis, because it means taking a moment to think about how I’m enough as I am. If my symptoms get worse or simply don’t get any better, I can still live a good life. My whole worth and life isn’t on pause depending on my AS.

I wish there was a cure for ankylosing spondylitis

Disability Pride doesn’t have to mean that I wouldn’t want a cure for ankylosing spondylitis to become available. You can be proud of how you live with your AS and still acknowledge how difficult it can be and that you would choose for your AS to be cured if you could. It doesn’t have to be one or the other.

It’s important to remember that Disability Pride Month is for all disabled people with lots of different needs and conditions. Not all people would choose to not have their condition if they could. I’m only speaking about myself here!

Disability history and community

Disability Pride Month is the perfect time to honor and remember the disabled people who fought for the rights we have today. In most places not too long ago, the law allowed discrimination against disabled people.

The law did not require services like transport, leisure facilities, shops, workplaces, and wider society to make accommodations for disabled people. In many places, disabled people fought and campaigned for the legislation that exists today, often through direct action like chaining themselves to buses or buildings. It’s a great time to find out more about the history of disability rights in your area.

It’s also a great time to celebrate the communities you’re part of that support you. That could be locally or it could be an online community. During Disability Pride Month, I went to a Disability Festival. There were disabled artists and performers and local organizations advertising their services and advocacy opportunities. It was an opportunity to learn more about the barriers that people with different conditions face through awareness raising.

Looking forward

Disability Pride Month also brings disabled people together to talk about the issues they still face in society. This could be anything from services not following the law, experiencing discrimination, struggles with access, or issues with the medical system and getting the right care. It could even be attitudinal barriers like common stereotypes about disabled people which impact how you’re treated.

Disability Pride Month doesn’t have to be all about celebrating your ankylosing spondylitis. It can be about pride, whilst also acknowledging the difficulties you face. You can celebrate the disability community and focus on advocating to improve the systems you use.

Did you celebrate Disability Pride Month this year? What are your thoughts on disability pride?