Outcry to Successful People with Disabilities Please Stop Trying to Remove Disability from the Lexicon

    

Double amputee finds refuge in sports, double amputee waiting to be cleared to compete in the Olympics, first Miss America contestant with autism; actor Chris Burke made headlines in the groundbreaking TV series Life Goes On during the 1990’s both being an actor with downs syndrome and the accurate portrayal of persons with the disorder to appear on TV.  These are the headlines greeting us on the positive side of the news, positive inspirational stories meant to lift our spirits, make us appreciate what we have or see those with limitations in a different light. Enter Aimee Mullins actor, model, Paralympic athlete delivering a series of motivational speeches designed to challenge our definition of words like disabled and handicapped, meant to inspire people with disabilities to reach for their dreams by sharing her own story of being without legs below the knee; having been born without shin bones doctors had little choice but to amputate, pushed by a coach she got into sports, found herself and her self-confidence. While it is acknowledged said speeches were meant to push persons with disabilities beyond their comfort zone, beyond what they think they can do, she is essentially playing with fire in how she frames that concept possibly to the detriment of everyone, disability or not. Removing words like handicapped and disability from the politically correct, polite or any other lexicon has far reaching consequences she obviously hasn’t thought through; now obviously one person isn’t going to change the whole fabric of how a culture, a nation views those with disabilities. But it is indicative of a larger trend, a juxtaposition between areas of more innovation geared toward helping those with various limitations, technologies and other things that end up doing so as a byproduct of their creation, and areas of our culture less and less inclined to accept persons with disabilities, make accommodations or follow the law.

Part of what has led to extraordinary success of persons with disabilities physical, developmental or otherwise can be attributed to the fact we have the ADA (Americans with Disabilities Act), we have subsequent laws going back even farther that require a child be educated, no matter their disability, to maximize their potential ability. Other sections of the ADA encompass things like access to public buildings, businesses in the form or ramps, elevators, curb cut outs so persons in walkers and wheelchairs can move throughout their community, acceptance of service dogs, shopping assistance for people with disabilities, personal care attendants  allowing greater living independence  and amyriad of unnoticeable things to the untrained eye that facilitate persons with a variety of medical conditions being able to do everything from get a job to perform basic tasks normal, able bodied people take for granted. Stipulations that all buildings build after 1990 be handicapped accessible and reasonable accommodations be made along with retrofits to comply with act allow for people living with conditions to reside in an apartment, as opposed to an institution or nursing home; reasonable accommodations applying to everything from applying for social services to applying for employment again making these things possible.  We have a Paralympics, a Special Olympics because we recognize the needs of athletes who are differently abled to compete in a place where their adaptive equipment is not seen as an advantage, they are not an oddity but simply competing against their peers in a sport. But we don’t need the words handicapped and disabled, wrong; one of the most crucial pieces of what makes opportunities for people like Aimee Mullins is our understanding of what those words mean, the need for accommodations, adaptive technologies, the concept you can drive a car with hand controls, the idea you can teach a disabled person how to use the parts of their body that do work to do something traditionally done with another part, how to test individuals, assess what type of controls that person needs. Without said infrastructure, without those mechanisms physical, social and legal, in place, it doesn’t matter how much potential a differently abled person has because they will never reach it. And all the strides we’ve made go away in a society already finding clever ways to circumvent the ADA in order to cut corners, cost and hassle. Unlike campaigns to remove the word retarded from federal language to be replaced by words far less offensive wording, alternatives far more accurately describing these people, removing the words disabled, handicapped leads people to the dangerous conclusion all people with limitations need is motivation, determination in cities where they still struggle with mobility issues due to poor maintenance of curb cut outs, lack of public bus service for people with disabilities, small towns, schools that can’t afford assistive technologies, others employers and public alike who judge them on their physical appearance, their perceptions of a person’s abilities instead of what they actually can do.  


Then there’s tackling the concept of disability and all that entails or all the perspectives it can house; meaning Ms. Mullins’ experience is completely different than someone who has their legs into their middle teen, adult years, knows what it’s like walk under natural power vs. walking with a prosthesis and is in some sort of accident losing that. Children have an incredible adaptability to expect the same of an adult is not only unrealistic but cruel; complications can come from the type of injury crush or war attributed ones where there is significant damaged to the part of the leg or arm doctors were able to save effects whether or not they will be capable of even wearing a prosthetic or how much use they get from it. Another factor persistent in Aimee Mullins story is she was the shining success she was, is because of either her parents medical insurance or because we have non-profits who will make sure children like her get the equipment they need contrasted against a man injured in an accident, losing a leg whom it took the coordinated resources and clout of Extreme Makeover Home Edition to put him in contact with an expert prosthesis maker who could fashion him a custom replacement limb to fit his active lifestyle, pay for it, fundraise for it or convince the maker to do the work pro bono, get him back on his boat and again supporting his family. Some of the biggest obstacles to achieving anything in life can still be where you live and the resources open to you or not open to you key components in the first autistic Miss America contestants story; she wasn’t diagnosed until age 11 due to living in a small more rural area that did not possess the knowledge or tools to do so. Similarly how do you move to where more resources are or potential employment opportunities either as a lower middle class or down right poor family just making ends meet or as a person with more severe limitations; you can get the moving company to move and place large furniture items, move boxes provided you can get your things into boxes to begin with. However putting a TV onto a shelf running cords for computers, electronics, needing someone to put together bookcases; all except the latter you might be able to pay a moving company extra to do yet you are not only out the added cost but the potential to have your things stolen or broken. Handyman services are available in most major cities yet aside from piled on costs of having such things done, there is the safety concern of who are these people you’re letting into your living space. Put that scenario up beside a family/friend support network who already understand what you need, are willing to help and it’s no contest as to why moving isn’t the best idea. Into her adult life Ms. Mullins, besides being fortunate enough to support herself she was, is finically secure enough to afford prosthetic leg choices geared toward the cosmetic, so modeling, walking a fashion runway don’t seem so daunting, such an example of a free spirit comfortable in her own skin despite her lack of limbs if she has legs that look like legs, that do not immediately give away the fact she is an amputee unlike the metal and gears sort of prosthetic limbs, we the public, are used to seeing.   

Going about achieving dreams, setting goals and carving out a life for one’s self, to say nothing of experiences, discouragements and setbacks are different based on what kind of disability, handicap, medical condition or limitation you have, the severity of any and all of the above. It is a completely different life and employment experience when you have a disability like cerebral palsy or MS issues that come with true limitations on mobility, actual limitations on function no amount of assistive technology, accommodation is going to totally compensate for. There is more to disability than a broken, damaged spirit when you have one of these, are ambulatory but can’t stand on your feet 8 hours, can’t handle the up and down nature of working a hotel front desk, the climbing, crouching or stairs associated with retail inventory, a rotating job description at someplace like Barnes & Nobel or local movie theater yet are a teen, college student looking for a job, looking to build a work history, when you’re one of the defunct college students whose degree opened no doors, you also happen to have a disability and simply want to work. The conversation changes drastically when a scooter would be a long term health hindrance outweighing a short term help, because you have a disability that can degenerate and remaining at your current level of mobility and function is dependent upon you being as active and ambulatory as you can, ruling out positions like greeter at Wal-Mart, customer service, sales at someplace like Best Buy, job vacancies that have been known to be filled by individuals wheelchair bound or aided by a scooter. Roadblocks are more than mental in pursuing a typically sit down job in a field like clerical where speech recognition, dictation software doesn’t solve a motor skills problem, however slight, owing to said dictation disturbing coworkers in the next cubicle on the phone, completing their own work, yet alone the person types 19 words per minute in an employment world where the minimum speed asked for is 35, most want 50-80. The obstacle is situational if you look at this field only to discover vacancy titles reading administrative assistant, once a dressed name for secretary, now requiring a driver’s license, access to a vehicle, a hurdle either because your condition prevents you from driving, you haven’t gotten a vehicle precisely because of the additional cost of modifications, or your young, have a disability, are just starting out and you haven’t attempted to get your driver’s license due to the fact you have nothing to drive once you get so much as a permit, no friend or family willing to accompany you with a permit as you gain driving practice. In order for you to get a license you first need a job to afford everything from specialized driving school/tutoring, to vehicle modifications, to be able to buy a vehicle, get it modified to have something to gain typical permit practice on in the first place. Bringing up even further evidence distinguishing from others with disabilities, Mullins had a supportive family not just in being willing to push her when necessary, but willing to see she got the medical treatment she needed, willing and able to transport her to sports practices, meets, games; not everyone has that. Poorer families may be forced to work hours that mean transporting to extracurricular activities impossible, some may not own a car, others are hesitant or ignorant about how to help the disabled person in their lives do things like get a license, apply for specialized bus services or get adaptive equipment needed since their condition has changed.        

Unfortunately as a society we are forgetting the necessary components of inclusion regarding those with disabilities in spite of legislation and regulation like the ADA, in spite of assistive technologies, in spite of improvements to prosthetic limbs, medicine in general. It goes beyond an insensitive cop dumping a person in a wheelchair to the floor, although that happens today with all too alarming a frequency, and goes to heart of differently abled people being able to be successful, create meaningful lives. Where places like vocational rehabilitation and job placement agencies designed to facilitate the employment needs of those with limitations could, not so long ago, negotiate with a potential employer to get someone a job at a ticket window, tearing tickets, working concessions, running a cash register in retail with a specialized stool to sit on counteracting their inability to stand for long periods and balance problems, now not only are they likely not to take such a person, because while ambulatory they can’t clean the theater after completion of shows, can’t complete inventory, reach high shelved items; if they do take on the person, the moment such an apparatus breaks they are just as likely to fire the disabled person, regardless how solid a worker, and hire an able bodied high school or college student who can do everything, then when asked blame it on poor work product, missed days of work due to illness, because it is simpler than trying to find someone to effect a repair. We found another, more qualified candidate is not just age discrimination code for we found a 25 year old not old enough to start a family and so far away from retirement we don’t have to worry about it; it is also code for we found an able bodied candidate than can do all parts of the job so why am I going to pay minimum wage to someone who can only do part of it?  Job training is next to non-existent for anyone and everyone but even when offered by agencies assisting the differently abled, employers won’t take it in favor of weighing down current employees, leaving a job opening vacant, because they claim they have no time to train, cannot be bothered with the paperwork associated with accepting the offer. Developmentally delayed and persons grappling with mental illness fare worse in many cases due to the sheer complexity of job duties, bloated job descriptions foisted on employees whether they’ve had the job years or are newly hired. Even in the minimum wage circuit where the former group has found refuge and a stable income, there are now so many moving parts to said jobs they can’t keep up; this combined with an almost inherent reluctance to deal with anyone differently abled repeatedly closes doors for them. Concerning the mentally ill apart from drugs to treat their symptoms too often causing them to appear dopy, spaced out, have trouble staying awake; stress can be a deciding factor in the ability to work or the decision to do one type of job over another. Part time jobs used to be few and far between currently the problem remains balancing job taxation and mental health; these individuals may not be able to handle a coffee shop, retail store at peak hours without getting panicky, agitated, overwhelmed, negotiating hours presents unwanted problems for employers translating into no consideration for the job, being fired.  Some jobs are too intense, too high octane for mentally ill individuals; former congressman Jesse Jackson Jr. made headlines for retuning to a medical facility for treatment of his bipolar disorder after attempting to go back to work against his doctor’s advice.                

Nearly equally forgotten are those surviving on disability stipends like SSDI (social security disability insurance) and SSI (supplemental security income) because it is an entirely different planet to have worn out joints at 55 and try to reinvent yourself. Older individuals tend not be afflicted with not one but multiple medical conditions meaning sitting all day can cause leg swelling, bad backs can make impossible standing for long hours  That even as a highly intelligent person in a wheelchair who needs help bathing, dressing, performing daily chores, not all of them can become lawyers and professors; either that’s not where their talents lay or we come back around again to resources, lack thereof, minimum and middle wage jobs closed to them by job complexity yet these people need a way to live, not be a burden on aging parents, siblings striking out making, their own lives. Therein lies the reason why we provide SSI not just social security disability to former workers who no longer can. We’ve become so used to success and inspirational stories, so used to seeing a comedian with cerebral palsy and a speech impediment making fun of his life to earn a living, we think anything is possible to the extreme, to the point of ridiculous conveniently ignoring stark realities presented that for every one who is such a profound example of accomplishment there are thousands more who tried and failed over and over, who had to settle for that ever horrid phrase of “collecting a check” to not be homeless, to buy clothing, basic hygiene products. Enter people like Aimee Mullins putting a politer face on the dissenting politicians who roar about budgets, how much our nation spends on so called entitlements meaning social security Medicare, Medicaid, some equally so called expert on the subject never failing to comment on the number of people receiving benefits who are classified as other than the normal retiree. No one of course connecting the dots between, if we want people on fewer benefits they need the same chances to create opportunities for themselves as everyone else instead of being systematically shoved out. Lost too if we remove words like handicapped and disabled from the lexicon is the impetus to continue striving for medical advancements that could eliminate the need for artificial limbs by virtue of being able to regrown them in a medical setting, we lose the catalyst to keep searching for better treatments for everything from MS to arthritis, unlocking the secrets to autism, reversing conditions like downs syndrome, cerebral palsy and a host of other ailments impacting people’s ability to function, to live full lives. In the intervening years between now and a cure for said issues we forfeit the drive for better technologies, devices and attitudes to aid in the success of the differently abled. Our athlete turned model, turned motivational speaker is where she is because someone thought to create prosthetic limbs specifically for running, because we advanced from peg legs; people who can’t drive a car the traditional way are given independence, opened doors to employment because someone thought to create that system and fight to have it accepted by departments of motor vehicles nationwide.           

Lastly Aimee Mullins is not the average picture of someone identified as disabled; yes she is an amputee, which is almost a sub category in and of itself. She had dealt with her lack of limbs since childhood but quickly became proficient at walking; becoming an athlete there is no indication she did or would have trouble holding a standard minimum wage job that meant standing 4-8 hours at a time. Any motor skills problem she had was below the knee so for something like a clerical job all she would need is typing practice vs. aforementioned individuals or persons who possess a significant speech impairment coupled with difficulties in holding a pencil, rendering speech recognition software useless. She doesn’t get up from day to day experiencing extremes in her health the way some suffering long term illness, disease and disability caused by the two aforementioned issues; she doesn’t use a wheelchair or other mobility aids to be hampered by communities barely in compliance with the ADA, hasn’t had difficulties gaining sufficient employment for similar reasons. Translation she is the last person to comment on what disabled people need or don’t need especially in terms of mentality or attitude; she is exactly the wrong person to talk about removing words like handicapped, disabled from our vocabulary or even redefining them, as she doesn’t understand them to begin with, making her speeches all the more offensive to people struggling with lots more than self-perception.           

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About Natasha Sapp

Proclaiming an edgy voice of reason to America,while bringing back the common sense to social issues.

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