Written by: Jason Peterson, Front Desk Receptionist, Skils’kin
At first glance, this is a relatively simple statement, one of proximity. For some people, however, this simple statement describes two places that are worlds apart. In my heart, I am not one of those people. I have always believed that the only difference between my existence and anyone else’s, is that I make my way in the world from a sitting position.
Rather than pointing out the similarities we all share, I’m going to reverse engineer my perspective to shed light on the three obstacles that make it difficult for people with and without disabilities to see each other as equals. It’s basic human nature as we grow from children through adolescence that propels us across an invisible threshold into adulthood. This white-knuckle ride is not for the faint of heart. While zits rise and fall like tectonic plates and hair springs up like crabgrass, our young minds wrestle with the thoughts and feelings that will become the foundation blocks of who we are for the rest of our lives. Having a disability does not insulate you from the very same struggles and milestones as those of our non-disabled counterparts, nor does it mitigate any possible frustration or pain experienced during the pursuit of the very same. More often than not however, the disability adds an additional level of complexity to the overall journey.
The first obstacle is perspective. Perspective is a bit of a double edge sword. By that I mean, especially for someone with a disability, there are two overall viewpoints in play. First, the perspective of the outside world looking in. This group includes family, friends, and society at large. Second, “my” perspective, or another way to put this, is the perspective someone has about themselves, the internal looking out. In my experience, anyone with a lifelong disability is awfully familiar with the first type of perspective shortsightedness. It is common for those that love and care for us to do whatever they can to alleviate or minimize struggles we face on a day-to-day basis. You will see things such as: your auntie, while serving you dinner, cuts up your food. Your best friend, while handing you a soda, opens it for you, without being asked. These types of people do these things for us not because we can’t do them ourselves, but in most cases, because these tasks look difficult when we do them ourselves.
I say this with total love and admiration, not only for the organization, but also for all of the people that are the lifeblood of that organization. I was a Shriner’s Kid. While I cannot put a value on each individual stay, I know without a doubt, my independence today, is a direct result of the summer I spent as a therapy inpatient working with my Physical Therapist, Jerry White. At any time prior to that summer, you could have asked any of my friends or family what they saw for me after graduation. The resounding answer would have been, living at home with mom. Sadly, that probably would have been my answer as well. In the course of three and a half months and gallons of sweat and tears, Jerry completely changed my internal perspective by opening my eyes and my mind to a world where I was capable of doing more than I ever thought I could. My future freedom was in the palm of my hand. I started that summer a little fat kid in a wheelchair that couldn’t do much for himself. I went home at the end of the summer, still a little fat kid, still in a wheelchair, but with direction, purpose, and drive for my future.
The second obstacle is passing value-based judgments, that is when somebody sees a person with a disability as something broken. I call these people “value-judges.” Sadly, this happens quite often within the disabled community; typically, this occurs with no malice or overt pain intended by the value-judge. In much the same way as perspective, value judgments are perpetrated both internally and externally. Through no fault of our own, people with disabilities may move slower, talk slower, think slower, or generally have more difficulty accomplishing tasks of any kind. The most unnerving attribute of the value-judge is that they can be the nicest person in the world otherwise. This behavior and way of thinking is more insidious than overt bullying because the disabled person can begin to internalize these ideas and in turn begin to believe that having a disability makes their life defective in some way.
In my 44 years of life, sadly, I am all too familiar with the value-judge’s manner of thinking. On a very regular basis, people assume that being in a power chair also means I have cognitive disabilities as well. Throughout my life I have had several friends both in manual and electric wheelchairs, and almost without fail, those of us in the power chairs, will be treated as though we are cognitively impaired by unenlightened newcomers. Conversely, however, the same automatic assumption is very rarely made for individuals in manual chairs. Additionally, the value-judge is usually overly empathetic. On one occasion, I was at the grocery store when a complete stranger walked up to me and offered to purchase my groceries. This stranger said to me, “Excuse me sir, I know your life must be hard because of your wheelchair and I would like to purchase what is in your basket for you.” Inside, I immediately bristled. Outside, I held it together and politely declined his offer. On another occasion, while sitting on the sidewalk waiting for my para-transit pick up, an older couple walked by me, and I heard the lady say to her husband, “Isn’t that sad, a blind man in a power chair.” What? It may be worth mentioning that I was wearing dark sunglasses that day. While I did find the comment to be funny, this assumption is indubitably harmful. When in the presence of the value-judge, you can’t help but to feel more disabled than you actually are.
Finally, we reach the third obstacle. This one is also a bit of a soapbox issue for me. Lowered expectations. While I don’t have children yet, I am fully aware of the natural inclination of loving families to feel let down when first learning their child has a disability. This is then followed by the innate fear of putting too much pressure and expectations on their disabled child. It is true. Your son has cerebral palsy and will probably never play school sports or ride a bike in the traditional sense. Your daughter has Down Syndrome and may never be a neurosurgeon or join the military. Being diagnosed with a disability does not end expectations; it changes expectations. By lowering expectations to alleviate struggle, the child with a disability is also robbed of opportunities to develop self-worth. Confidence and self-worth are the direct result of experiencing struggle. Struggle leads to achievement and achievement leads pride in one’s self. How are we to expect more for ourselves if more is not expected from us?
The need for fair expectations is especially important where employment is concerned. For many disabled employees, myself included, arriving to work each day is the last link in a complex chain of events that must occur for us to claim our peace of the wage earner’s pie. The reality is a large majority of people with disabilities depend on care providers, medications, various therapies, and a plethora of medical professionals to help maintain our daily lives. The vast majority of these needs are not covered by job offered medical plans. Those of us that have the ability and choose to work, are forced to maintain the delicate balance between gross monthly earnings & hours worked and staying eligible for Medicaid/Medicare. Too often it is assumed that people with disabilities choose not to work because they don’t want to. While this may be true for some, it is certainly not true for all.
I sincerely hope I have successfully dispelled possible “us” and “them” ideas where people with disabilities are concerned. Life is a continuum with varying degrees of ability. Like the aperture of a camera lets in more or less light based on size, think of your perspective as the aperture of your heart and mind; keep your perspective on those around you wide open so you do not miss any light. Never be afraid to expect greatness from someone that is different from you. The path to success might be different from the one you would have chosen, but those differences may also provide crucial opportunities for learning something new. At the end of the day, a closed mind is the biggest disability of them all.