The Erie Times-News recently ran a USA Today article titled “What Wheelchair Users Would Like You To Know – And What To Stop Asking.”
Following:“I’m Living a Good Life”: What Wheelchair Users Would Like You To Know – And What To Stop Asking
I found the article very informative from a wheelchair user perspective, however, many of the wheelchair user comments in this article seemed to reflect what wheelchair users interpret as the feelings of those who are not. not in a wheelchair.
I have a unique perspective, like many others who have children, spouses or parents in wheelchairs. When I was 16, my son was diagnosed with transverse myelitis, a disease that permanently damaged the spinal cord. After six years in a wheelchair and years of grueling physical therapy, he now walks unaided and leads a very exciting and happy life, despite a lot of pain and some limitations every day.
His point of view is positive, but this does not always happen with those who find themselves, at some point, in a wheelchair, thus creating in others the mentality of “Oh how sad” or “I am. don’t know what to say about this person so that i don’t hurt his feelings “or” how can i navigate this situation without embarrassing him? “Etc.
Many people who have never met a person in a wheelchair have dilemmas in their minds about how to handle the situation without hurting or making the person in the wheelchair feel frustrated or judged. The answer? Walk away, stare, exclude the individual from the conversation without realizing it.
We lack discussion of both points of view, so we often assume what the other is thinking and feeling without confirmation.
Experiences differ. Therefore, what each individual thinks about their life in a wheelchair is different. My brother has a daughter with cerebral palsy (now 25) who has been in a wheelchair her entire life. Her parents would get angry with those who stared at her or those who asked her why she was in a chair, or those who simply ignored her. Yet they were also angry when someone asked questions or assumed her limits, even if she had them. They now welcome these questions because it gives clarity and helps others learn to answer. As someone who is not in a wheelchair, how would I ever know what your limits are, if any, unless you talk about them?
I believe that the only way to have a broader vision and understanding of what is going on in this particular world and to respond appropriately is through communication between people in wheelchairs and those who are not.
My experience with my son has helped me see people in wheelchairs very openly and honestly because I had a source for asking these difficult questions: is it okay to ask about your condition and for how long you have been are you in the chair? What do you do for a living? What are the difficulties you encounter in your profession? What are your goals and dreams in a wheelchair or out of a wheelchair? And so many others.
Every human being has limits; it is part of being human, whether in a wheelchair or not. My son preferred that the others ask. He wanted the children who continually watched him to feel comfortable asking him questions in his chair – not just for the purpose of discussing “who he is”, but because those who don’t have a wheelchair don’t know. really not what is good and what is not to ask. It’s part of who he is and who he has become and, just like humans outside of the wheelchair, these are questions that everyday encounters produce.
They are called “icebreakers”, a starting point. For example: if you see a person in a casting, you ask, âWow, what happened? If you see a 6-foot-10-inch person, you can ask them if they play basketball – not because the person’s height is the only thing another person sees, but because it is the person’s height. opening a discussion about that person’s life. This opens the door to discovering the person you meet.
Some in wheelchairs, as I discovered, prefer you not to ask, and some would like to open a discussion about their situation in the wheelchair, in the hope of understanding who they really are. There are no rules, only experiences, and since most do not have the experience of having these conversations, too many assumptions are made on both sides of the aisle.
My son accepted being disabled and even made fun of himself because he sometimes called himself a âcrippled threatâ, which for many would be socially unacceptable. For him, it helped others see him as part of his life experience and never the only thing that defined him.
People outside of the wheelchair world have a hard time deciphering who is where on their journey, so we just ignore, watch and go. It’s not cool, but we don’t know what the alternative is because we don’t know how you feel, what your limits are, if any, what you think about it, what’s appropriate and what doesn’t. isn’t in the conversation or what reactions are acceptable.
Conclusion: Open discussions on this precise issue would create a better understanding between the two parties instead of assumptions about what the two parties “feel”.
Shelly Manison is a resident of North East, Pennsylvania.