Why we should embrace questions about disability

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by Kevin Schaefer |

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In the documentary “Still: A Michael J. Fox Movie,” the famed actor recounts how he hid his Parkinson’s disease for several years after his diagnosis. Even as his symptoms became noticeable, Fox wanted nothing more than to suppress that part of him and retain his public image exactly as it was.

Today, Fox is an outspoken advocate for the Parkinson’s community. He shares his story regularly, challenging stigmas about disability that once held him back. Whereas the perceived shame of his condition once defined him, now he embraces the wholeness of his identity.

I recently spoke to a group of high school students who were attending a math and science summer camp. Speaking alongside a parent in the SMA community, we talked about the nuances of living with SMA and the accessibility needs of disabled people. We then gave the students time to ask questions.

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One student said that her question might be a bit taboo and personal, but she asked how people with SMA manage to go to the bathroom and shower. I replied that it was perfectly OK to inquire about it. For anyone who reads my column, it’s well-documented that I have no problem exploring this subject via poop and catheter jokes.

Still, with the internalized ableism that runs rampant in our society, it’s understandable why people are hesitant to ask questions like this one. We’re so conditioned to view disability as inherently negative and fearful that we place stigmas around everyday components of disabled life. It’s the reason parents pull their kids away in public when the kids express curiosity about wheelchair users.

Even I used to feel uncomfortable about answering questions like the student’s. I felt awkward discussing the details of my care routine with anyone other than close friends and family. For a long time, I bought into the notion that the intricacies of my SMA life should be kept behind closed doors.

Yet through the unwavering support of the SMA community, I learned to reject ableism and accept every part of my disabled self. I now write and speak about my story and immerse myself in the world of rare disease and disability.

As Disability Pride Month approaches, one of the best forms of advocacy we can all participate in is talking openly about our conditions. Ask us about our bathroom routines, assistive technologies, and relationships. Have the same curiosity as an eager science student. Once we remove the fear and assumptions surrounding disability, we can learn to recognize each other’s humanity.

Granted, not every disabled person is as open about sharing their stories, and that’s OK, too. Yet by changing the way we view and talk about disability on a widespread scale, more people in our communities will feel less shame about an identity component that’s outside anyone’s control.

The inquisitive nature of this student and others in the group gave me hope. As attitudes shift and we recognize the inherent meaning of inclusion, we may all feel comfortable embracing our inner alien.

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.

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