The disability community deserves greater investment

Too many people living with Charcot-Marie-Tooth disease (CMT) feel alone in their struggle. Too many are under the impression that they must individually shoulder the burden of managing their symptoms while navigating an environment that isn’t constructed with disabled bodies in mind.

No one should have to overcome these hurdles alone. Disabled folks ought to be able to expect more than this.

However, those of us with disabilities are often left out of mainstream conversations. And when disability does breach the headlines, it’s often used as a punchline. Few depictions of disabled lives and dreams appear in the media.

Too many view our lives as unworthy of investment. Companies seem reluctant to cater explicitly to our needs. Legal structures make it difficult for many of us to contribute as much as we’d like to our chosen field.

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A dearth of accessible options in day-to-day life hampers opportunities for disabled people to present ourselves fully in our local communities. Sometimes, it feels as though even medical systems consider disabled lives to be acceptable casualties.

These problems may not stem from intentional, targeted acts to scorn people with disabilities, but I don’t blame members of our community for taking them personally.

As a society, are we able to recognize the unique hurdles disabled people must navigate? Are we ignoring people with chronic conditions when they say they feel stigmatized?

All of us in the disability community should feel comfortable fighting for greater accessibility and opposing ableism. Moreover, I expect our able-bodied friends to listen and stand with us in solidarity.

Working to improve acceptance and accessibility doesn’t only benefit those of us with disabilities; it’s in everyone’s best interest. Curb cuts are a common example cited by disability advocacy groups. Though they may have been designed to assist wheelchair users, they also accommodate cyclists, strollers, shopping carts, and many other wheeled devices. And don’t many people, disabled or not, enjoy features such as closed captioning and voice-to-text technology?

As Payton Rule, a clinical psychology PhD student and fellow CMTer, once wrote to me in an email, “Disability is a natural part of the human experience, and a community that anyone can join at any time.”

Even if we don’t rely on adaptive devices now, who knows what the future has in store? While many people may feel privileged not to be directly affected by ableism or discrimination, our health status is never guaranteed.

Even if investments in accessibility don’t produce monetary returns, they’ll still put us in a better position to develop meaningful relationships, appreciate more diverse forms of love and service, and more fully embody values that many claim to hold dear.

I know there is much debate regarding how exactly to provide meaningful assistance to disabled populations. Economics, politics, bureaucracy, and opposing ideologies are always difficult to navigate. However, we can all at least begin by listening to each other in good faith without fear or judgment.

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.