I'm a person who was born with a physical disability, Arthrogryposis Multiplex Congenita. It is certainly a visible disability. The following is just my take on disability etiquette and life as a person with a physical disability. You don't have to agree with it and I'm sure there are plenty of things I'm missing. This is just based on my background, experience and education. I realized pretty early on if I was going to be "successful," I would have to use my brain. A career in the NFL or NBA was simply not an option for me. I was fortunate to come of age in a time when automatic institutionalization was no longer a knee-jerk reaction of the medical community to people born with disabilities. No, I did not "pull myself up by my own bootstraps", overcome discrimination or "beat the system" on my own. I was fortunate to have a lot of help along the way in the form of a loving family, good friends and caring educators.There is plenty to complain about here in the US, but we have done a pretty good job on making the world more accessible and acceptable for the disabled community. That's not to say everything's perfect, we still have a long way to go.I've been to other countries where there are no ADA like protections. Getting around and getting by in those places is significantly more challenging. In my experience, accepting attitudes can be even more beneficial than laws on the books.The etiquette I would like to have around me begins with myself.
I cannot assume everyone around me knows what kind of help I may need or want. If I need help with something, I need to ask in a polite and respectful manner. If someone declines for whatever reason, there's no reason to get mad. I just ask another person. So if you see a disabled person and you think they may need some help with something, don't just assume they do. Ask in a polite and respectful manner. If the disabled person declines, don't let it upset you. I for one, always appreciate people who ask.
In the last five or so years I've started using a power chair to get around. I don't feel I'm confined to it, rather I can now go a lot of places I could not go before. I also use another mobility device called a row-scooter that is powered by my arms. Some may look at these as fancy toys but to the person using them they are vital for exercise and well-being. It may sound funny, but please don't touch such devices used by disabled people. Somebody may get an urge to take off in my power chair because it looks fun and yes it kind of is. Please don't! Please don't mess with the controls or settings and my power chair is not a place to lean on or an extra seat if I'm not using it at the moment. It's best to think of such medical equipment as an extension of the user. If you want to check it out, just ask. I'll be glad to go over it with you and maybe let you take it for a spin!
I'm not one to get upset over the language used around disability. The only word I don't like for describing the disabled is "cripple." For whatever reason, it has always rubbed me the wrong way and made me cringe whenever I hear it. Disabled, differently abled, physically challenged are just different terms to describe the same thing, someone with a physical disability. The term I like the most is person with a disability. That puts the person first. Yes, changing the way we speak may help change the way we think but there are other more important issues that also need addressing.
I felt like I faced significant discrimination when applying for jobs. People would look at me and just assume I could not work. It didn't seem to matter that I got through high school and completed a bachelor's degree. Some people just assumed the worst. Having a great phone interview only to be crassly rejected in person later was certainly no fun! I realized such employers were not places I would even want to spend 40 hours a week no matter the pay. I just had to keep looking for the right fit. I found that fit with the state of North Carolina.I think I was hired during "Hire The Handicapped" week but that's okay- I'll take it! I don't like to say just give me a chance but rather earn the respect that warrants a chance. We can all create our own opportunities with consistent determination. Again, I try to temper my expectations of others via what I expect of myself. In my experience, what I put out is what I get back.
If I Inspire others, I hope it is for the right reasons. The fact that I do ordinary everyday things with a disability is not in and of itself inspiring, rather it's just living. I hope to inspire people to consider different ideas, respect different belief systems and gain some new insight through writing and talking. I'm not a disabled person, rather a person who lives with a disability. I think we all have limitations of one kind or another both visible and invisible. The people who inspire me are those who improve the lives of others.
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