Examples of ableism I’ve encountered in life with FSHD

I’ve been disabled for over 50 years, and I spent over 30 years working with people with disabilities. The language surrounding disability has evolved in that time.

For the most part, that’s a good thing. As an example, person-first language has become more common. It’s more appropriate to introduce someone as a person with a disability, rather than as a disabled person. I appreciate this, as there’s more to me than my disability.

One newer term I’ve struggled to understand is ableism. I’ve had a number of conversations on this topic with friends in the disability community, who’ve given me many examples. I also searched Bionews, the parent company of this website, and found a variety of columns expressing a number of perspectives.

I read an excellent column by my colleague and SMA News Today columnist Kevin Schaefer, detailing a situation when he was a victim of ableism as he imagined a world without it. In “The Battle Against Ableism Is Tiring, but I Won’t Give Up,” former Muscular Dystrophy News Today columnist Leah Leilani says that exposing and eliminating ableism is an uphill battle — a view many in the disability community seem to share.

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Real-life examples

Recently, I talked with my wife, Wendy, about ableism. She’s a former special education teacher and has been the partner of a person with a disability for over 44 years. She also grew up around people with disabilities. Her extended family included someone with intellectual disabilities, as well as a cousin who was deaf and blind. I thought she might help me understand this term a little better.

We discussed some incidents when I might’ve been the victim of ableism. When we’ve dined out, for instances, hostesses have assumed that they need to move a chair to make room for my wheelchair. However, I prefer to sit in a regular chair when dining. Because of my shoulder and arm limitations with facioscapulohumeral muscular dystrophy (FSHD), I need to be close to the table and at the right height. That’s a challenge in a wheelchair.

Occasionally, people have stepped in to assist me without asking first. For example, I’ve had strangers grab my arm to help me as I transfer from a seat to my wheelchair. I don’t need this kind of assistance. In fact, given my balance issues, it’s more likely that someone grabbing me could throw me off and cause a fall.

Wendy also mentioned that she doesn’t like when people talk to her as if she were my proxy, asking her questions that should be directed toward me. She’s pretty good at deflecting and simply tells people to talk to me.

Assuming people with disabilities can’t speak up or do things for themselves is an example of ableism. I’ve had this happen many times over the years, but I’ve always tried to react positively and view these situations as opportunities to teach people not to judge me before getting to know me. After spending some time with me, people realize I have abilities as well as disabilities.

Being overly kind to a person with a disability can be another expression of ableism, though I struggle with the concept that people can ever be too kind. My hope is that being kind to someone with a disability is a good start toward being kind to everyone.

Telling a person with a disability that they’re an inspiration for simply living their life can be another form of ableism. I play music at senior facilities, nursing homes, community events, and church. After a performance, I’m sometimes told that I’m an inspiration. Inspiring people is exactly what I’m trying to do with my music, so I accept the words as a compliment.

Objectively, I know I’m a pretty good musician and entertainer. I don’t believe the compliments are just lip service. That being said, I know there are many times when those of us in the disability community hear false praise, which speaks down to us and can be very hurtful.

I like the viewpoint on ableism expressed by Halsey Blocher, another columnist at SMA News Today (and now the columns manager for all Bionews sites). She suggests we can put a positive spin on these situations if we respond with love.

I’d like to suggest that those of us in the disability community turn these moments into gentle, caring teaching opportunities. My life experience tells me that once people understand, they’re happy to do the right thing.

Of course, that’s not always the case. There are folks out there who’ll never quite get it. It’s a great temptation to blast these people for their ignorance and unwillingness to learn. I’ve done that a time or two over the years, but those times haven’t made a positive change, and they’ve reflected badly on me.

I think it’s best to stay calm and try to educate people when they react inappropriately. Hopefully, that will make a positive change and move us toward a world without ableism.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.