When friends become disability advocates

“Are you kidding me?!” Mandy’s wide eyes and dropped jaw expressed her genuine shock. Chelsea and I were discussing our recent frustrations with inefficiency and a lack of dignity in disability services, such as hospital care, wheelchair repair, and insurance policies. Chelsea chuckled, and I shrugged my shoulders. Nope, we’re not kidding.

Mandy and Chelsea are dear friends of mine who live across the country from me now, but we stay in touch through frequent phone chats. They are like sisters to me because of the things we have in common and the way we can honestly talk with one another about difficult and complicated things.

Chelsea and I both have mobility-related disabilities; she has arthrogryposis multiplex congenita, and I have spinal muscular atrophy (SMA). Our needs differ, but we share many similar experiences with wheelchairs, injuries, caregivers, and living independently.

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Mandy is able-bodied and has done some caregiving for both of us. She’s a great listener who asks plenty of thoughtful questions, and because of that, she has learned a lot about the culture of disability and how the world looks from where we sit. Oh, and she also has a very strong sense of justice, which is why she responded the way she did to our stories.

“No, seriously, I really struggle with this,” Mandy continued with tears in her eyes. “It’s not OK, and I am so sorry. It’s just an eye-opener, and I’m thankful that I get to be in proximity and relationship with you ladies, to hear about these things that I’m ignorant of because I’m not in a wheelchair, and yet it really does break my heart, and I want to do something about it.”

When she said that, my own anger and frustration about our situations melted away. My heart warmed, and I smiled because I felt seen and cared for by my friend, and that meant more to me than anything. It wasn’t me and Chelsea against the world anymore, because we were reminded that there are people who are with us and for us.

From stranger to friend to advocate

Mandy isn’t the first or only person in my life like this, either. So many strangers have become friends, and friends have become advocates, the more we spend time together. They get so upset when they see a car parked in front of a ramp or a shop that has a step to get inside! These things annoy me, too, and would probably make me a bitter and cynical person, except that these friends often say the same thing to me: “Before I met you, I don’t think I ever noticed this sort of thing before, and now I am so much more aware of it everywhere I go. I think, ‘How would we get Connie in here?’” The loving sentiment gives me hope because it plants seeds of creative possibilities.

For the most part, I do not believe that the inaccessibility of the world is due to hatred, prejudice, or defiance, but simply due to ignorance. How can people become aware of a need or an issue unless they have a personal experience, relationship, and connection with someone to whom it really matters?

When you go a mile in someone else’s shoes — or wheels — you can’t help but see things differently and care about them in a new way. Whether that prompts you to build a ramp, write a letter to a government leader, host a fundraising and awareness event, or hug a disabled friend in solidarity, your response can truly make the world a more accessible place.

Note: SMA 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.