Why do u talk about disability or FA so much? Has it become your identity?

I had this comment recently and thought, it was important to address. Not that I need to explain myself but, because I get this from a lot of people and I’m pretty sure many others do too.

When the disability is so visible, it becomes the identity in the eyes of so many people. Honestly, I also thought it was for so long but, disability isn’t my whole identity. It has played a very big part in the way I look at things - yes but, I’m still a girl you know. I love shopping. I love changing up my hair. I love to eat hahah - foodie to the core. People who know me know I’m talkative and witty - extroverted energy. The list can go on. Disability is the book cover but, it’s not the whole book. What truly makes me is the person I am, not the disability alone. The person is just as unique as the disability and the ones who can see that are the ones who move closer.

Plus, disability/FA isn’t really talked about enough but, there are so many people who deal with it. (I know now, but 20 years back - it felt like I was the only one) Yes, I talk about it, maybe a little too much but, it is something major in my life. It has changed my whole being - literally and I’m pretty sure my family’s too. So, I don’t think I can stop talking about it. Give me other topics to talk about and somehow, it always ends with disability lol.

If we talk about it more then, it brings more awareness and more people would know about it. Hence, we will have more people to come forward and advocate. This would lead to fundings, treatments and someday a cure. Remember when we had the pandemic, Covid. People across the world were affected and because so many were involved, we got a vaccine pretty quickly. If we had the same awareness and involvement with rare diseases then, we’d have so many treatments by now. That’s why awareness and talking about it is important. That’s why I try to be as raw and real as I can be.

Disability is something I’ve chosen to talk about. If you had something life‑altering, wouldn’t you talk about it too? In a way, it’s given me an interesting story to tell, so I can’t really complain. But a lot of people assume that whatever they see or read online is the whole picture. It’s not. It’s not even half — trust me. What you see is simply what was chosen to be shared ✨

Thank you for this question. Sign up. Continue reading. See ya in the next. ✌🏼