SMA Awareness Month – Day 7 – I’m LIVING with SMA


It’s time to get back to the positive. I’m not a person who’s dying because of SMA. I’m a person who’s living WITH SMA. I’m LIVING. I’m in the here and now. I don’t care about hypotheticals. I care about today, and today I want to talk about access. The biggest barrier to those of us with SMA is not SMA itself. It is a lack of access to the world and all of its vast resources.

Dominick at the White House for a forum on LGBT and disability issues wearing a purple button down shirt, a purple and light blue striped tie, and a green Live Event badge, sitting in his black wheelchair.

This isn’t just a problem for the SMA community. This is a problem for anyone with a disability. Lack of access is a huge barrier many of us face. It may be anything from lack of physical access to the environment around us to lack of educational opportunities. I mentioned in a previous article for this month that many of us with SMA are quite resourceful. We have to be if we want to play on close to any sort of level playing field with our able-bodied peers. Still, I don’t have a friend with a disability that hasn’t faced some barrier in relation to accessibility.

Let’s face it. We live in an able-bodied world. Able-bodied privilege is ever present in our society. We’re raised, as people with disabilities, to accommodate our family and friends who are able-bodied, not the other way around. In fact, many of us feel bad when we limit our family and friends because of our disabilities. I know I’ve sent my family off to inaccessible places without me, because I felt bad about them not enjoying themselves due to my disability.

I’m here to tell you that this needs to stop! Nothing is going to change unless we demand it to change. Instead of sending your family to places that are inaccessible, you should send an email to wherever you are planning to go and explain how they have lost your business. Personally, my family enjoys themselves less, anyway, if they know I’m stuck home alone, so they do not enjoy themselves the way they should.

Businesses do not understand things in human terms, so showing up and saying you have a disability doesn’t mean as much as saying they lost out on your patronage. They understand things in financial terms. Tell them you went to a competitor because they WERE accessible. We, in the disability community, have a spending power in the hundreds of millions of dollars, per year. We are a highly viable community of consumers. That isn’t even counting our families, who should agree to go less places (or no places at all) if they are not accessible.

I once read that understanding your able-bodied privilege means that you recognize when some places are not accessible to people with disabilities, and you refuse to go there, out of respect. You refuse to go there in the hope that enough people doing this will bring about change and accessibility. Right now, nothing is changing because we send our families without us, or they go on their own time. This does nothing but condones the inaccessibility and keeps places from choosing accessibility, since it is more profitable for them.

Those of us with disabilities need to start standing up and saying to our able-bodied friends and family, “Do not frequent these places that are inaccessible to us, out of respect for us.” The more people who stand with us, the better chance we have of making this world more accessible. We cannot do it without all of your support, so next time, you know a place is not accessible to someone with SMA or any other disability, consider not going. Help us continue to LIVE with SMA, and make our living a little bit easier, thanks to helping us increase the accessibility and therefore our place, in this world.


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