The Advocacy Issues That Matter To Me

I feel like I've mentioned my advocacy here and there, and I'm sure we all know the reason behind why it's important; for us disabled people to have equal rights. But I wanted to dive into things Cure SMA is actively working on to help make our lives easier. I found all of this out at the conference at an advocacy panel.

Air travel and wheelchairs

Cure SMA is working with Delta and Congress to actively get air travel fixed. The biggest issue is chairs getting damaged! I'm very lucky and thankful that United has taken care of my chair, but I have very choice words when it comes to those videos you see online of people’s chairs getting broken and sometimes worse - people getting hurt due to this!

I genuinely can't believe that, in 2024, disabled people are still left behind when other groups are put ahead of us. When will enough of us have to suffer to get heard? Thankfully the bill got passed!

Supplemental Security Income (SSI) concerns

My very first article on SpinalMuscularAtrophy.net discussed Supplemental Security Income SSI? (Read it here.) In this article, I mention how draining and scary relying on it can be. It's always a balancing act with SSI: don't make too much money! I'm so grateful for the money always!

I love being financially independent, but now at 25, I'm considering dating and although it's far off, marriage. I definitely think about how unfair it is that just because you get married, your SSI benefits are reduced by 25%. I would love to meet the person/people who approved this because, in what world, is that ok? That difference is a lot to deal with!

I hope one day the limit gets better and we can be more free. I'm grateful to be able to be home and safe but sometimes I think about future and these questions of marriage and benefits. Cure SMA has SSI reform as one of their important advocacy points.

Getting a wheelchair in an emergency

While all of these issues are important, the most important to me is definitely emergency wheelchair care. Stuff happens and does insurance care? Absolutely not! Something recently happened to the point where my chair got completely broken...and because it was on a weekend, I had no resources. Thankfully mom got a chair from Amazon but why do I need to have a backup chair in case anything happens?! I'm not eligible for a new chair until next year and that's just when I can get the paperwork started. It's so infuriating.

If you hurt your leg, you have emergency doctors. When my “legs” are damaged, it doesn't matter. I definitely try to not think about things like this because it can be depressing but as I'm writing this and I'm living it, it's hell.

I know that I matter and I hate having to constantly prove everything to the government and insurance. I’m such a minority and I'm tired of being brave or the first one sometimes. I'm so tired of the struggle. My chair is my entire life and you're telling me just because I'm disabled, my rights are less than someone else's?! I just want change, why are the insurance companies and the government still in the stone age with disabled people?

I want to live and thrive and sometimes I'm forced to remember this terrible fact..That I am alone in terms of what I need. That I could get hurt and the government wouldn't care. Why does insurance thrive off of this? Why is everything a fight? I'm grateful for my life but sometimes I'm tired of fighting, tired of being disabled, sometimes I just want to forget.