A conversation with two disability advocates with CMT, part 1

First in a series. 

Living with a disability like Charcot-Marie-Tooth disease (CMT) is difficult. It’s important not to minimize this fact.

However, for some, a salve for the sort of negative feelings a disabled life can bring is connecting with the disability community to find solidarity in larger disability rights and justice movements.

Recently, I spoke with two disability advocates over a video call: Lily Sander, a Muscular Dystrophy Association (MDA) Ambassador and person with CMT1E and hereditary neuropathy with liability to pressure palsies; and Erin Black, a CMTer with CMT1A. We chatted about what disability advocacy means to them.

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YL: What does disability advocacy mean to you?

LS: I’m able to speak on behalf of others who aren’t able to be in some of the rooms I’m privileged enough to be in. With the MDA, for example, we have Hill Day, where we speak directly with senators, representatives, and their staff.

But advocacy also takes the form of quiet moments, everyday local interactions, conversations — sometimes messy or uncomfortable.

Disability advocacy is so necessary for my life. I feel such a sense of healing, purpose, and belonging when I take something that causes immense pain and heartbreak and turn it into something that can create positive change, not only for myself but for others as well. That is how I see disability advocacy; it’s necessary to live well with CMT.

EB: Advocacy starts at the micro level; it isn’t necessarily this glamorous Capitol Hill moment all day, every day. [Fundamentally,] it’s about looking for places and pockets within our system and our everyday lives that can be improved for the sake and benefit of other people.

In your own words, what are disability rights?

LS: [Disability rights is] allowing disabled people to have the right to access the same resources, housing, education, and transportation as nondisabled people. It’s letting disabled people show up in all aspects of our society. It’s allowing people with disabilities to show up in the same conversations and lead conversations on advancing equity. It’s about leveling the playing field. It’s the very basics.

EB: Disability rights is about walking into the room and not just having a seat at the table, but having a voice. It’s about having the accommodations one needs. It’s the concept that people with disabilities do not fit within a one-size-fits-all approach. What one person with a disability needs may be different from what another person with a disability needs, which is different from what somebody without a disability needs.

It’s something that matters to every person because the disability community is the only minority community any person can join at any point in time.

Why should people in the CMT community connect with others within the larger disability community?

EB: I am so much more fulfilled as someone who identifies as someone with a disability, as someone immersed and learning from people from different walks of life and living with various types of disability. When you expose yourself to others and their lived experiences, their stories, your perception of yourself will change.

The minute you plug yourself into this larger identifier and larger advocacy world, the world isn’t quite as dark, daunting, and exhausting. It’s uplifting and action-oriented.

I am led by some of the finest disability advocates of our generation. Many of them don’t live with CMT, but they are teaching me just as much as my mentors, friends, and peers with CMT.

When you have the opportunity to walk into a larger, really vibrant community, why wouldn’t you take it?

LS: [I agree with] everything Erin said. It helps you understand yourself. It’s healing. We weren’t meant to walk, or roll, this journey alone.

We’re stronger together. There is a space and need for small, focused initiatives, but there’s also a need for wider solidarity, a group that is overarching and can leverage diversity.

From my position, though there are times when things feel hopeless because our conditions are so rare, I’ve also realized that when there is progress for one disease group, there ends up being progress for all of us. This is true as laws change, but this happens in science and research, too.

It’s so encouraging. That’s why collaboration is so important, and why the MDA is grateful to collaborate with so many disease organizations, including CMT. It’s a beautiful position to be in, to represent a community that is so large to the best of my ability while also not forgetting I’m a patient, too.

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Personally, I find hope in these two perspectives. In my next column, I’ll share excerpts from our conversation that relate to how advocacy specifically manifests in their respective lives.

Note: Charcot-Marie-Tooth News 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 Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.