Two people are having a conversation. One is talking down to a woman and hurtful red speech bubbles are going towards her face. Her expression is angry.

MS and What You Shouldn’t Say to a Person Using a Wheelchair

I thought I was in a safe space with “my people” that Saturday morning.

My husband Dan had dropped me off at my weekly WW meeting (WW is the health and wellness program formerly known as Weight Watchers), and group members were sharing their weight-related stories and struggles. I have struggled with my weight for practically my whole life, so I felt very knowledgeable and comfortable with the conversation and the group of nearly 30 people I was talking with.

One comment about wheelchair users stung

Well, I was comfortable until a member started sharing her personal story and motivation for starting the program. Her reason for coming to WW? “I don’t want to be confined to a wheelchair like one of the people I take care of.”

Ouch! Excuse me? Confined to a wheelchair? That was quite a smack in the face!

Living with SPMS and using a wheelchair

I mean, living with secondary-progressive MS, I haven’t been able to walk in nearly 18 years and have had to use a wheelchair in each of those approximate 6,500 days. And she essentially was saying that she started WW because she didn’t want to end up like me.

So much for a safe space, right?

In her defense, I was sitting behind an obstruction so she potentially did not see me. But still, does a person in a wheelchair need to be present for people to show some compassion and watch what they say?

As a woman who can’t walk and has to use a wheelchair, let me get this off my chest:

My wheelchair gives me independence

I am not confined to my wheelchair. It does not confine me. It’s quite the opposite actually. My wheelchair gives me independence!

If anything confines me, it is my MS and the damage this progressive disease has caused to my central nervous system for the past 23 years since my diagnosis. My wheelchair is my freedom and independence.

I didn’t call out or challenge this woman during the meeting, and she left before I could drive over and talk with her. But yeah, even then I don't think I would have said anything. That’s not my style.

Hearing this comment from other people with MS

The reality is, I’ve heard the whole “I don’t want to be confined to (or end up in) a wheelchair” comment many times from people who are newly diagnosed with MS. And I’m not sitting behind an obstruction when they say it. They’re saying it to my face. So much for a safe space.

I get it. I understand it. I know I was there when I first was diagnosed, but why is it OK for people to say something like that to a person who needs to use a wheelchair to get around because MS has taken away said person’s ability to walk?

It’s not OK, people.

Most don’t aspire to have to use this kind of assistance to get around, but life and an aggressive form of MS happen.

Living a positive life despite MS

Since my MS diagnosis and needing to use a wheelchair, I truly have tried to live by example. I try to show people, not tell them, that you can continue to live a positive life despite MS and, yes, despite needing to use a wheelchair.

I wonder if this is why people feel comfortable saying such insensitive statements to me. Perhaps they’re truly seeing me and not my wheelchair.

The ability to walk is not the secret to a good life

Or maybe it’s that I’m only 18 years into my work of showing others that the ability to walk isn’t the secret to living a quality life. If it were, I never would have married Dan, written a book, earned my graduate degree, traveled throughout the U.S., and had countless other amazing experiences.

I have a lot more living to do and my heart, not my legs, fuel that determination.

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