The last few months I have had the opportunity to do a number of fun and rewarding public speaking engagements for conferences, nonprofits, business groups, and schools. Topics are varied, but I generally include a little information about disability etiquette.
Disability etiquette is part of a large and nuanced conversation that is too big for this newsletter article, but one point that is relatively simple to discuss is the use of language; too often negatively-charged words are used in the media (and during casual conversation) when talking about disability. For example, most advocates in the disability community, myself included, would be happy if the phrases “suffers from _____”, “victim of _____”, “confined to a wheelchair”, and “stricken by _________” were eradicated from the human lexicon. The negative connotations that are associated with these phrases are unnecessary at best and demeaning and dis-empowering at worst.
The other important thing to remember when speaking or writing about disability is called “Person-First Language.” This means that you say things like “a woman with a disability” rather than “a disabled woman.” Having a disability is only one facet of the complex human experience, and labeling someone as “disabled” first and foremost overshadows the many other attributes and roles with which the individual may also identify. For example I prefer to be called a musician (who also happens to have a disability) rather than a disabled musician. To me, my disability is very secondary to things like my violin training, songs, and bands when I am discussing music. Disability is of course part of the conversation, but it doesn’t always have to be a main focus.
I haven’t always held such strong convictions about the language around disability, but my mind was opened when I started reading about a concept called Disability Pride a few years back. Disability Pride can be defined as ” the belief that disabilities are a natural part of human diversity. It represents a rejection of the notion that one’s physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of self-acceptance, dignity and pride. It is a celebration of the heritage and culture of people with disabilities, and a validation of their experience.”
Once I finally realized that disability is a natural part of the human experience and not inherently negative, I felt an intense sort of freedom, and I became passionate about spreading this concept of Disability Pride. After all, disability does not define people in entirety or ruin their possibilities at having a happy and meaningful life. It is rather society that needs to work to include all people through embracing and prioritizing accessibility, tolerance, and respect. I also started to realize that everyone will experience disability to some degree throughout their lifetimes, so it is a concept that affects all of us. Furthermore, I came to believe that painting disability as negative detracts from the ways that it can, in fact, provide a much-needed perspective in society.
For example, I feel acutely aware of human interconnection and interdependence because I have needed a great deal of assistance throughout my life. However, I don’t see it as something to feel apologetic or sad about – it’s part of life for all of us at one time or another. I also see the need for respect and inclusion for all people in our society, because all lives matter. I believe my experiences with disability have helped me to internalize these concepts, and that makes me grateful. Furthermore, my disability has shaped my life in countless ways and thus I honor it as a part of me that cannot be scorned or denied any more than my hair color or family background. I take pride in my disability because, in part, it has brought me to where I am today… And I am excited to be here right now!
I know that not everyone with a disability sees the world the same way, but there is a lively contingent of activists that relate to this concept of Disability Pride. I hope to help promote these ideas as I continue to play music and speak at events. Want to learn more? Here is a short, 10-minute podcast that covers disability etiquette in more detail: Great Wild Radio Interview on Disability Etiquette