When Disability is the Story

By Mark E. Smith

I’m all for remarkable stories about remarkable people, from the historical and the famous to heroes next door. In fact, much of my free time is spent studying great people, where I’ve learned that we can discover much of our own potentials through the examples of others.

Yet, what’s discouraging is all of the mainstream-distorted disability fribble that we must wade through to get to great stories that involve disability. Sure, there are lots of so-called “inspiring” stories about disability on the newswire and television every day; but, very few are actually newsworthy when you take out the disability aspect.

For example, there’s nothing newsworthy about a 17-year-old kid with a great smile and lots of friends. But, if we give that young person a disability, then you have a feel-good cover story for your local paper, where, …Jimmy may not have all of his limbs, but he still has a smile that lights up the neighborhood. Or, there’s nothing remarkable about two parents with four kids who live on a farm. But, if those two parents have a disability – dwarfism – now it becomes a sensational reality TV show, Little People, Big World. Why is that? Why do we, as a 21st-century, westernized culture still see disability, in itself, as newsworthy and sensational, without requiring any real substance?

Unfortunately, the answer is, because our culture still doesn’t recognize the fact that many with disabilities live strikingly “normal” lives, where we work and raise families like most others. People still buy into the myth that disability, in itself, somehow makes every day “different” – and it’s captivating and mysterious to those readers and viewers who don’t know any better. It’s really tying into stereotyping and ignorance in the name of newsworthy.

Nevertheless, some with disabilities argue that such news stories and television shows about strikingly average people who happen to have disabilities are positive and educational, showing them in a “normal” light. However, that doesn’t prove true, as if that was the case, those with disabilities wouldn’t be profiled in the first place. The network, TLC, would never produce a show about an “average” family on a farm – that is, because no one would watch such a mundane subject. Yet, once disability is brought into it, then there’s sensationalism that sells. The X-factor is disability, and it reflects poorly upon everyone involved, including those of us with disabilities at large. The consequence is this: When people see those with disabilities applauded for living ordinary lives, it actually diminishes our equality, where if the ordinary is seen as our peak, then our true potential is lost in the message.

Interestingly, those of us with disabilities can likewise be falsely drawn into seeing the disability experience of others as inspirational, when it’s truly not inspirational at all. We can look at a story on television, just like everyone else, and say, Wow, isn’t it inspiring that a guy who’s a quadriplegic can play rugby, get tattooed, and pick up chicks? Yet, if you remove the disability, there’s no inspiration in that story – it’s every jock at your local bar. What we should do is remove the disability from the story, and see if true inspiration remains? For example, a 27-year-old preacher who travels the world speaking to millions is an amazing story, especially when you realize that he’s done it on his own, starting when he was 19, where religion is only part of his message, where he is also dedicated to speaking to youth about staying on positive paths, no matter the temptations or challenges that one faces. The fact that this amazing individual, Nick Vujicic, was born with no arms or legs simply adds to the story. The inspiration to look for, then, isn’t in the fact that one simply has a disability, but that he or she is truly impacting others in extraordinary ways.

Of course, worst of all is when the media portrays those with disabilities as inspirational when, in fact, the individuals’ lives are absolute train wrecks. TLC recently debuted a documentary on “Kenny,” the gentleman known from the Jerry Springer Show, who has no legs and walks on his hands. As the documentary showed, Kenny, a high school drop-out, caught the attention of some in show business, landing a decade-long career on the Jerry Springer Show, where he would sneak-up on guests and “freak them out” as “the man with half of body.” However, as the documentary chronicled, Kenny left the Jerry Springer show, and was living in a transient motel with his fiancée and her two children, one of whom Kenny thought might be his biological child because he had slept with his fiancée seven years earlier when she was still married to her husband, the legal father of the two children. Kenny and his fiancée’s goal was to have a paternity test, but Kenny insisted that no matter what, he would be there for the two children – and they even called him ”Dad.” Well, the paternity test came back negative – Kenny was not the father – and the documentary ends with an update that Kenny left his fiancée and the two children, and is now living with his parents.

Now, where the documentary crossed the line was in perpetually stating what a remarkable, inspiring individual Kenny is, seemingly oblivious that his life and choices are horrendous at best, devastating to others at worst – after all, how does a man of any moral fiber whatsoever vow to raise two children, have them living in poverty in a transient motel, then split? That may be a Jerry Springer episode, but it certainly isn’t inspirational, as TLC insisted.

Surely some reading this might argue that disability defines my own life story, asking the question of, Mark, if you remove disability from your own story, is there anything left to your merit beyond a guy with cerebral palsy?

It’s a valid question, and I believe that the answer is, absolutely there’s more to my life story than cerebral palsy. See, my roles – through the mobility industry, writing, speaking, and charity – aren’t centered so much around my own disability, but are ultimately centered around serving others. Yes, my disability adds to the story, but it’s ultimately my larger efforts in life that create what I hope is a legacy of positively effecting the lives of others in many different ways. And, that’s how we should all assess the merits of our own lives if we end up in the public light in any way, where we candidly ask ourselves, Am I being acknowledged solely based on disability, or because of the larger merits and accomplishments in my life? Again, individuals like Nick Vujicic are great examples, where disability, by nature, may be part of the story, but it’s not the whole story – and I strive to follow their leads by making my own life less about disability and more about making a difference in the world around me.

Indeed, I applaud mainstream media stories about those with disabilities, but only when they’re warranted. I don’t want to read about how 17-year-old Jimmy’s smile cheers up the neighborhood as one with a disability – it patronizes and reduces Jimmy to less than his potential, as it ultimately does everyone else with a disability. Nor do I want to see absolute train wrecks with disabilities presented as inspirational, making the inexcusable, excusable based solely on disability.

However, what I do enjoy seeing are stories like when 17-year-old Jimmy, who happens to have a disability, gets a summer internship on Capitol Hill – that’s a great news story, as it would be about any 17-year-old with such accomplishment. Put simply, let us find inspiration in stories about the sum of one’s humanity and accomplishments, not the singularity of disability, where stories don’t patronize but honor.

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Man Vs. Life

By Mark E. Smith

If there’s one common criticism of my writings, it’s that I’m an idealist. However, such critics couldn’t be more wrong. In fact, I’m the most cynical, paranoid person I know. See, I recognize that it’s Man versus Life, and when we’re not living to our absolute best, Life will take us out – it’s itching to drop us to the canvas like a soft-jaw boxer, never to get up again.

I figured out as a young kid that I could never give in to Life – I could never let it win. Sure, it’s tried every day since I was born to tear me apart, but I strive to stay one move ahead of it, a chess game of real consequence. It’s thrown adversity after adversity my way, landing a few blows; but, for the most part, I’ve bobbed, weaved, and ducked, telling it, Is that all you’ve got?

And, yes, it always has more – Life’s a worthy opponent, never ceasing. I give Life credit for being especially proactive with my cerebral palsy, where it thought that it could slow me down, placing an anchor around my neck right out of the womb. But, Life made a strategical error, lacking foresight, not planning on my simply choosing to grow bigger and stronger than that anchor, not dragging it as a burden, but carrying it as an honor.

Then, once life saw that physical limitation weren’t something that would slow me down, it decided to toss in mental and emotional turmoil – dysfunctional parents sure to defeat me. But, like watching old tapes of a boxing opponent, I learned Life’s most devastating tactics by seeing what it did to those around me, where it used addiction and poverty to defeat them. I knew it would send those my way, so I got my fists up as soon as the bell rang, ready to rumble.

Alcohol destroyed the lives of many around me, so I simply had to avoid that slippery slope of indulgence, not routinely drinking. Poverty kept those around me destitute, so I simply had to get a formal education, follow a strict work ethic, and live debt-free. And, irresponsible living took the health of those around me, so I knew that I had to maximize my health. Life lured those around me into easy defeats, placing them on the ropes – but, I wasn’t falling for its tricks.

Pushing 40 now, and having found security against many of Life’s blindsides, I might be inclined to relax a little, let down my guard, not be so cynical or paranoid. No way. To the contrary, I know that Life’s still waiting to tear me apart and rip me to shreds – as quick as we rise, Life will try to make us fall even faster. Life shadows me, where if I have one slip, I know it will kick all of the legs out from under my table, crumbling me like house of cards. But, I won’t let it. I sleep with my eyes open. I keep sobriety on my breath, and money in the bank. I work till I collapse on the keyboard, and I workout till my arms feel raw, ready to tear from my torso.

Life may be pacing me, but I’m pacing it, where when I take my last breath, I will know that I’ve likewise left Life bloodied, gasping on the canvas, with nothing left, from among the most epic battles it’s ever faced.

Confining Ourselves: Where’s the Outrage?

By Mark E. Smith

Many of us involved in disability advocacy dream of a day when those with disabilities in the U.S. unite and form a serious, influential constituency – one much like the NAACP or AARP.

See, as those with disabilities, if we simply united as a body of millions, solidifying our collective voice on a national level, issues like detrimentally-low mobility and in-home care funding would be resolved in an instant – our influence on elected officials would be so great that they’d address our needs to no end. It really would be that simple – no rocket science or mountain climbing involved.

Yet, let’s be blunt about our current state: As those with disabilities, we remain a fragmented population of uninvolved individuals across the nation. What we are, is non-vocal as constituents, and what we aren’t is recognized by our elected officials and the mainstream at large. Even the so-called disability groups – as much as they boast efficacy – remain tiny, unknown, and off of the map on Capitol Hill, with arguably no political power. Everyone knows the NAACP, AARP, and even the NRA. No one in the mainstream can name a national disability rights organization, nor can most individuals with disabilities. Why is that?

Further, with the power of the Internet – linking those with disabilities across this nation from their own homes, with the click of a mouse – how is it that the top disability websites remain minuscule in visitors compared to even niche mainstream communities on line, where a single car or video game forum gets many times more posts each day than all of the disability-related forums combined? Why is that?

Why is it that everyone from gun owners to video gamers are dramatically more unified than those with disabilities, especially when those of us with disabilities have so much at stake – from health care to socio-economic equality?

Indeed, Why is that? is the question that we, as those with disabilities losing the national battle to be heard, should be asking ourselves today. Why is it that after four decades of advocacy, those with disabilities remain fragmented from the mainstream, vacant from the political process, and isolated from each other?

Our ongoing overall fragmentation as a community comes down to one fundamental answer: As individuals with disabilities, we’re so consumed with our own personal self-interests that we don’t summons the will or energy to consider the needs of our peers or the value of a “collective disability community.” Put simply, as those with disabilities, we’re so self-centered with our individual lives that we don’t care what’s happening to others with disabilities around us.

Now, that sounds like a critical statement, but it’s not; rather, it’s an insightful one. See, most of those of us with disabilities aren’t self-centered by nature, but by necessity – and that fact has contributed to our lacking collective power as a community.

As we sit here today, those of us with disabilities continue facing bleak realities in the U.S.:

• Those with disabilities are 1/2 as likely to have completed high school, and only 1/3 as likely to have a bachelor’s degree, as those without disabilities

• Adults with disabilities are almost 3 times as likely to live in poverty as people without disabilities

• 62% of those with disabilities are unemployed

• Only 7% of those with disabilities own their own home, compared to 69% of the general population

Those are strikingly grim statistics, and what they point to is the fact that many with disabilities – arguably, 2/3 – are in a daily struggle for individual survival. And, as much as we’d like to tout a one-for-all ideology that unites those of us with disabilities in our struggles, it simply doesn’t happen. The fact is, many with disabilities are so consumed by their own individual struggles that they can’t summons the capacity to unite and fight in others’ interests. In very real terms, when one has ALS, and is struggling for attendant care and equipment funding – not to mention facing the emotions of the circumstance – it’s unreasonable for anyone to expect him or her to be on the front lines of disability advocacy for others.

And, this is where many overlook the critical difference between a powerhouse lobby like the AARP versus those with disabilities failing to unite. The average AARP member has attended college, has a household income over $50,000, owns one’s home, and is married with children, in good health. Such a constituency demographic as those belonging to AARP truly have the time, energy, and resources to dedicate toward supporting their community at large. Again, this is a striking contrast to those with disabilities who struggle for basic necessities on a daily basis. You can’t save others when you’re trying not to drown.

Yet, no matter the valid reasons of why those with disabilities fail to unite, the truth is undeniable: If those of us with disabilities are to ever gain an influential voice in the U.S., we have to unite. We have to put community before ourselves, and recognize that efforts toward a collective voice and goals will ultimately serve us better than simply caring for our own individual needs in the immediate.

I’ve witnessed a striking example over the last decade in my roles in the mobility industry of how those with disabilities unknowingly invest in their own individual self-interests, ignoring the needs of others with disabilities, to the detriment of all involved. Everyday, I work with individuals struggling for wheelchair funding. And, what’s telling is that while those in need of wheelchairs are frustrated during the funding process, once they have their own new wheelchairs, they disappear into the sunset, exhibiting seemingly zero concern toward their peers’ similar struggles. That is, most wheelchair users demonstrate no regard for addressing the system at large that’s harming those with disabilities. I got my wheelchair – that’s all that matters, is the message that many with disabilities indirectly convey, and the same short-sighted attitude is applied to attendant care funding, access to health care, and so on.

As a result, those with disabilities continue losing vital resources. For example, since 2005, power wheelchair funding has been cut by 39.78% – and only covers models for in-home use. While these facts are clearly unacceptable, many individuals with disabilities truly don’t seem to care, remaining silent on such issues. Of course, those with disabilities who were simply glad to get their own power wheelchair in previous years are now finding the funding climate even more challenging as they struggle to get a new one – and apparently accepting less and less is fine in their minds. Inaction speaks louder than words.

However, for our community as a whole, such I-got-mine thinking is leading to a doomsday climate: An overall lack of accountability by those of us with disabilities to advocate for our needs is eroding access to even basic services. Currently, there’s proposed legislation to further devastate mobility funding via a tax, but few with disabilities have spoken against it. Similarly, positive legislation like the Community Choice Act for increased in-home care funding is vital to those with disabilities, but few with disabilities have spoken to support it. Our lack of voice tells legislators that we’re passive at best, and willing targets at worst. Capitol Hill can do what it wishes, knowing that we don’t advocate for our own interests.

But, imagine if, in 2005, those individuals with disabilities didn’t just say, I got my wheelchair – that’s all that matters, but they had actually said, the system’s failing us – let’s collectively fix it. …Imagine if 10,000 wheelchair users had gathered on Capitol Hill – like the NAACP, AARP, or NRA would do – and brought awareness to the issue of mobility funding. The power of our collective voice wouldn’t have been ignored, and we would have better mobility and in-home care funding today than ever before in U.S. history.

At this writing, a national issue is currently that the U.S. Preventative Services Task Force recommended changing the schedule for routine mammography screening for women, raising the starting age from 40 to 50, and changing the frequency from annually to every 2 years. Upon this news, within minutes, women’s advocacy groups blanketed the media and their elected officials with voices of outrage, that while the recommended guidelines may save toward health care costs, they’d likewise risk the health of millions of women. Within hours, women’s outrage made every news outlet, where one couldn’t pick up a newspaper, turn on television, or log onto the Internet without being aware of it. The story of how the task force’s recommendations would jeopardize women’s lives became a national issue within 24 hours – and it all started with women voicing their outrage. At this point, it’s unlikely that the recommended new guidelines will go any further than a mere proposal, namely because women simply aren’t allowing it.

By stark contrast, the overwhelming majority of those with disabilities – dare I say, 99% – remained totally silent and disengage in collective change when a 3.27% mobility funding cut was proposed in 2005, then a 27% cut in 2006, then a 9.5% cut in 2009. As those with disabilities, we did nothing to stop the proposed cuts, and all were enacted – and, make no mistake, every individual who relies on insurer funding for mobility products has, is, or will suffer because of our refusal to protect our own interests. It’s disheartening to admit, but when one looks at the cuts in services – from mobility funding to in-home care – we’ve truly done this to ourselves. Inaction is a form of consent.

Now, you may be thinking, Mark, in several paragraphs, you’ve gone from excusing those with disabilities because the socio-economics are so grim, to faulting them for inaction and a lack of accountability – which is it?

My answer – read that, the disability community’s answer – is that it’s both. Yes, as individuals and as a community we face valid hardships, but we can’t continue using them as reasons not to address the larger importance: We have no collective voice in the 21st century. And, until we, as those with disabilities, learn to look beyond our own individual self-interests, and pursue a collective voice, our socio-economic and political status will never improve. We, based on our own daily complacency, will indefinitely hold ourselves hostage as a fragmented, rarely-heard community, where we allow ourselves to be stripped of services, one by one.

The vital call for action is clear: Get involved as an individual. When you encounter an issue that needs addressing, don’t simply skirt around it for yourself; rather, sound the alarm bell for the greater good of all with disabilities. Going back to my example of reduced mobility funding because those with disabilities have ignored the issue at large, if every individual who struggled with Medicare and insurer funding of wheelchairs simply wrote to his or her congressman, thousands of letters would pile up in a matter of days, forming a collective voice that couldn’t be ignored. If your elected representative in your sole congressional district received 100 letters from constituents next week sharing their mobility funding horror stories, he or she would take exceptional notice – the collective voice would inform and alarm everyone from the representative to the national media that change is needed in real time. And, change would occur.

You may have overcome the hurdles to get your own new wheelchair and in-home care, to name two necessities; but, now your obligation is to help your peers get theirs, and to ensure that the next time that you’re needing vital resources, they’re easier to get, not harder.

As an individual with a disability, you need to move beyond your own hard-luck story, and join others to address issues at large – become part of a rallying of the troops. Write to your elected officials regarding the struggles of obtaining vital resources like funding for mobility and in-home care, be an engaged member in on-line disability communities for change, and encourage others with disabilities to get involved with you. You need to stay informed of the pressing issues of today – the Community Choice Act toward in-home care, Medicare cuts in catheter coverage, and the proposed further cuts and taxing of wheelchairs, to name just three issues – and get involved as a voice of advocacy. That is, live up to your obligation to be a contributing member to the disability community at large.

No one likes to hear the discouraging facts, but, as individuals with disabilities, we’re statistically failing ourselves in the U.S. today. Let us stop viewing our community’s grim socio-economic realities as valid exemptions, and see them as imperative reasons to rise up – as individuals, as peers, as a community, as a collective voice of millions – and usher in the political and social change that we’ve neglected for four decades, but are unquestionably capable of achieving in all but an instant.

Schooling Senator McCaskill

claire

By Mark E. Smith

It’s always striking to me when people try to politicize wheelchairs and scooters – mobility aids, that is. After all, disability doesn’t discriminate – republican, democrat, or other, when you need a mobility aid, you simply need it. A mobility aid stems from a medical necessity, not a political preference – and ideology doesn’t get a vote in the process when you’ve lost the ability to walk independently.

For this reasons, it stunned me when I saw Missouri’s junior Senator, Claire McCaskill, say to Fox News’ Chris Wallace last week that “hundreds of billions of dollars” can be saved by simply not “giving free scooters to Medicare beneficiaries who don’t really need them.”

Her statements went beyond a political gaffe, and into the realm of spiteful, where Senator McCaskill went on national television and did nothing more than make outlandish, prejudice claims, politicizing mobility aids and scapegoating those with disabilities out of pure ignorance.

This wasn’t the first time, however, that Senator McCaskill went on the attack of mobility aids – and those of us who use them. See, in a May 27, 2009, town hall meeting, she noted that mobility aids and citizens with diabetes are taxing our health care system:

…This is the example I love to give. I did it on Charlie Thompson’s radio show this morning. Many of you heard it. And that is, how many of you have seen the ads for scooters? The ads for scooters. You can get a free scooter. Now think about that. It’s not a free scooter. Guess who’s paying for it? We’re paying for it. Now why do we have a system that is marketing and foisting upon many people that may not want ’em a scooter, ’cause it’s free? Well, it’s because we pay to get people scooters. Now, which is healthier? …Walking. So what are we doing? We’re paying for the scooters. …We’ve got to get back to rewarding good outcomes, we’ve got to get back to, and we can do this. We can lower these costs. Diabetes alone is an incredible drain on our tax dollars….

So, what Senator McCaskill directly suggests is that if you’re unable to walk due to disability like me, you’re a senior like my family member who barely gets by with a walker, or you have diabetes like my 12-year-old neighbor, you’re a lazy, “incredible drain” on the system.

As one with a disability, how do her words make you feel?

I’ll tell you in no uncertain terms how I feel about Senator McCaskill’s views: They make me feel like I’m hearing an elected official who’s so out of touch, and lacks such empathy for many of her own constituents – like adults with cerebral palsy, seniors with mobility impairments, and children with diabetes – that she’s not just from Capitol Hill, but void of reality.

All of this leads me to one critical question: What have those with severe disabilities, the elderly, and even children with diabetes done to cause Senator McCaskill to make us her scapegoat for the country’s fiscal crises and health care debate?

The answer is, those with disabilities have done absolutely nothing to be made Senator McCaskill’s target – and the statistics prove that point.

In 2007, Medicare spent approximately $1.2-billion on “power mobility aids,” out of total Medicare spending of $430-billion. Therefore, if Senator McCaskill had her wish and eliminated Medicare coverage of all power mobility aids, it would only save Medicare $1.2-billion out of its $430-billion expenses. Although, $1.2-billion is a lot of money, it’s actually only 0.28% of Medicare’s expenses – proving that Senator McCaskill’s claim that mobility products are taxing the system by “hundreds of billions of dollars” isn’t just exaggerated, it’s ludicrous.

Where the statistics become even more compelling is when one realizes that 67% of Medicare-funded power mobility aids go to the severely disabled, non-elderly – those with paralysis, muscular dystrophy, cerebral palsy, and multiple sclerosis, to name a few. Therefore, Senator McCaskill’s fiscal argument that eliminating scooter funding will save “hundreds of billions of dollars” becomes even more strikingly absurd, where scooters for the elderly are less than 1/3 of the $1.2-billion of power mobility funding. Scooters for the elderly, then, are “budget dust,” as Washington insiders call such small amounts, not a “hundreds of billions of dollars” end-all to health care funding as Senator McCaskill outrageously claims.

It’s also imperative to address Senator McCaskill’s statements that the elderly – and, anyone with a disability, really – get “free scooters” handed to them. Her statement demonstrates her absolute ignorance toward the diagnosis, prescription, and funding process. Scooters and power wheelchairs are FDA-regulated medical devices that must be prescribed, then authorized based on proven medical necessity, before Medicare will fund a mobility aid. Furthermore, in this era – where mobility funding has already been decreased by over 35% in the past five years, and the qualifications have become extremely stringent, including the in-home-use-only provision – it’s tougher than ever before for those with even the most clear-cut needs to obtain a mobility aid. In very simple terms, if you rely on a mobility aid, then you know that the process of getting one involves adjectives like frustrating, time-consuming, disheartening, unjust, and bureaucratic – and Senator McCaskill’s flip use of free isn’t in the equation, insulting those not only struggling to obtain a mobility aid, but also living with disability.

Now, since I’ve dispelled Senator McCaskill’s fiscal absurdities by simply presenting the facts, let me directly address her social concern that the elderly population is exploiting scooter use.

The social reality is, the elderly population isn’t racing out to get scooters as Senator McCaskill states. In fact, seniors who use scooters do so out of medical necessity – that is, they are limited in their ability to walk and require a mobility aid, accordingly. However, where the reality of scooter use among the elderly becomes especially poignant is that many elderly use scooters as a “last resort” due to declines in health, and some refuse to use a scooter even when unquestionably medically needed, as they see it as “giving in.” The elderly in America are a persevering, independent population, and they don’t turn to mobility aids until absolutely necessary.

In my own family, I have a 99-year-old relative who still lives in his own home, going shopping and such with assistance, and uses a walker. I’ve spent a great deal of time with him this summer, and it pains me to see him struggle with basic mobility, barely able to move about with his walker. Not only is he an ideal candidate for a scooter, but I actually got him one. Yet, he refuses to use the scooter, feeling as though it would be “giving up” – an understandable emotion for a man of lifelong physical strength and independence. As positive slants as I’ve put on scooter use in speaking with him – that it will make him more mobile and safer in everyday life – he refuses to use any device beyond his own legs, no matter how weak and limiting they are.

As my own relative demonstrates, contrary to Senator McCaskill’s ignorance, not only isn’t the elderly population exploiting scooter usage, many of age aren’t using mobility aids when they truly need them, so it’s entirely debatable that the elderly population is, in fact, under-served by mobility aids. Further, it can be argued that the under-served elderly population is actually a fiscal liability by not having mobility aids, a risk toward Medicare hospitalization costs. Again, I look at my elderly relative teetering while using a walker, and wonder what one fall – one trip to the emergency room, not to mention a hospital stay or surgery – would cost Medicare? We know that such a hospital visit would cost far more than a preventative $1,200 scooter. In these ways, not only aren’t scooters over-utilized by the elderly, but Senator McCaskill’s wish to restrict their funding even more could most likely increase Medicare costs by not preventing falls and injuries by those who need mobility aids to sustain health and safety.

Lastly, I’d be amiss if I didn’t address Senator McCaskill’s belief that television commercials that advertise scooters and power wheelchairs promote fraudulent use, that such ads encourage those not in need to get a mobility aid through Medicare. Again, people without medical conditions don’t pursue mobility aids. After all, there’s not one argument why a sane, healthy person would see a scooter commercial and decide to pursue a diagnosis and prescription, and try to go through the approval process to get a mobility aid that they don’t need. People without disabilities don’t want to be disabled. By literal comparison, McCaskill’s concern would also suggest that Lipitor commercials encourage those in perfect health to try to convince their doctors to prescribe them the cholesterol-lowering medication even though they don’t need it. The rational fact is that people respond to mobility and medication commercials for the same reason: Existing medical need. If you’re totally healthy, a commercial for a mobility aid or condition-specific medication won’t convince you otherwise. On the other hand, if you have a condition, and you respond to a commercial that advertises a solution, that simply makes you a consumer, not a “fraud” as McCaskill labels beneficiaries who rely on mobility aids.

When one looks at the simple facts – that power mobility aids cost Medicare $1.2-billion annually, not “hundreds of billions” as Senator McCaskill claims; that mobility aids are merely a tiny fraction of Medicare’s annual $430-billion expenditures, not Medicare’s foremost cost as Senator McCaskill suggests; and that the elderly population is reserved toward using mobility aids, not seeking them fraudulently as Senator McCaskill asserts – one truth is evident: Senator McCaskill, of the great state of Missouri, is out of touch, misinformed, and a voice of degradation toward those with disabilities.

Let us hope that the great constituency of Missouri uses its collective voice to reel their junior Senator, Claire McCaskill, back down to Earth, where those with disabilities are respected, not scapegoated for one misguided politician’s hoped personal gain.

Road to Danger


By Mark E. Smith

I’ve been reading posts on the WheelchairJunkie message board by users asserting their rights to use their wheelchairs along the shoulders of roadways, as “pedestrians” – and it reads to me as a troubling argument, where based on pedestrian accident statistics and remaining social barriers of inaccessible sidewalks and transit systems, we should advocate getting wheelchair users off of roads, not on them.

Technically, throughout the U.S., a wheelchair user is a pedestrian, able to travel where pedestrians travel. For some, this includes traveling down the shoulders of roadways when sidewalks aren’t available. Of course, as experienced by some posters on the message board, ignorance remains toward disability and wheelchair use, where some with disabilities have expressed being stopped by the police for using their wheelchairs “in the street,” provoking the wish of some to seek legal protection so that they can continue using their wheelchairs along roadways when needed.

What’s occurred to me in reading the discussions is that while many wheelchair users are quick to tout their rights as pedestrians on roadways, none mention personal safety and responsibility, where just because one can or needs to use a wheelchair along roadways doesn’t mean that the activity is prudent.

The fact is, automobiles occupy the road, and the minute that a pedestrian ventures into the proximity of vehicular traffic, extreme awareness and caution must be taken. While a pedestrian may have every right of way, it still doesn’t discount the fact that pedestrians who use wheelchairs are regularly struck and killed by automobiles in this country, frequently reported in news stories.

According to the National Center for Statistics and Analysis, whenever pedestrians interact with roadways, there’s potential danger, to the toll of 1 pedestrian death every 108 minutes in the U.S. Additionally, the facts show that placing oneself outside of normal pedestrian patterns – such as outside of crosswalks – skyrockets the risk of an accident, with 75% of pedestrian-vehicle accidents occurring at non-intersections.

Interestingly, I’ve read wheelchair users stating that they travel on the shoulders of roadways even when there are accessible sidewalks because it’s safer, that the bumps and slopes of sidewalks can be dangerous. Statistically, nothing is farther from the truth. In 2001, while 4,461 pedestrians were killed on roadways, none were killed on sidewalks by roadway vehicles according to statistics. Sure, some who use wheelchairs say that a rough sidewalk could cause a wheelchair to tip, resulting in injury; however, such odds are so small that they’re a non-statistic, especially for a wheelchair-sidewalk related death. Put simply, pedestrians using wheelchairs on roadways are unquestionably at risk, but not so on sidewalks – that is, the safest place for a pedestrian, wheelchair or not, is on a sidewalk.  (And, it’s illegal in most states for a pedestrian to travel along a roadway when a sidewalk is available.)

Similarly to using sidewalks, pedestrians dramatically increase safety by simply obeying intersection laws, crossing in crosswalks, namely when the light gives the pedestrian the right of way (again, 75% of all pedestrian fatalities occur at non-intersections, so crossing at controlled intersections dramatically increases safety). And, traveling during daylight hours also reduces the risk of pedestrian accidents, where 66% of pedestrian fatalities occur at night, between 6 pm and 6 am.

Still, some pedestrians who use wheelchairs have no choice but to travel down the shoulder of a road or cross at non-intersections, as there are no sidewalks or crossings, a disconcerting reality. Advocates blame this dangerous fact on poor infrastructure, with not enough governmental attention to sidewalks or accessible transportation. Yet, with 4 million miles of paved roads in the U.S., we will never have coast-to-coast sidewalks or transportation, where pedestrians will always have to interact with roadways at some point. In this way, it’s vital that, no matter the right of way, pedestrians who use wheelchairs lookout for themselves to the best of their abilities when interacting with roadways.

When one finds oneself in a situation where there’s no sidewalk, one should be smart about it, taking all necessary precautions to travel as safely as possible. One should stay as far as possible outside of the flow of traffic; one should wear blaze-colored safety clothing to dramatically call drivers’ attention; one should fly an orange flag to increase the wheelchair’s visibility; and, one should avoid inherently dangerous roads and situations altogether. Yes, a pedestrian may have the right of way; however, one should still take whatever steps possible to ensure one’s own safety above all else.

I write on this topic from great personal experience, having spent 31 years as a pedestrian using a wheelchair, including using my wheelchair to get back and forth to work till this very day – and I know the pitfalls and hazards, from no sidewalks to drivers running red lights. However, I’ve dedicated myself to not becoming a statistic, where I strive to take every precaution possible to stay safe. If there’s a sidewalk, I’m on it; and, if there’s a crosswalk, I use it. I wear a blaze-orange safety coat, and I fly a safety flag. And, I never assume for a second that being on the road is in my favor, even when I have the right of way. I know that the law does not ultimately prevent pedestrian accidents, it merely assigns liability, and I have no interest in being on the winning side of the law after being hit by a car; rather, my goal is to not get struck in th first place.

From these perspectives, fighting to allow pedestrians who use wheelchairs increased access to roadways truly defeats safety and accessibility. I agree that it’s unrealistic to assume that no one with a disability ever has to travel down the shoulder of a road out of necessity – the reality is that some have to, where there are no sidewalks, and they shouldn’t be hassled by the police if traveling with prudence. However, one’s recognizing necessity is a lot different than literally advocating wheelchair use on roadways for the sake of “personal liberty,” as suggested by some. As a result, what we really need to do is fight to keep wheelchair users off of roadways by advocating increased access to sidewalks and transportation, encouraging our peers to stay safe through logical channels, to not become the latest tragic news story.

Indeed, when there’s no sidewalk or accessible transportation on our local routes, let us not pursue the right to use our wheelchairs on dangerous roadways; but, instead, let us assert ourselves with City Hall that there needs to be more sidewalks and transit services to keep us safe and independent in our local communities. That is, as pedestrians who use wheelchairs, let us fight for safety through accessible sidewalks and transportation, not seek the skewed right to become roadway fatality statistics in the name of personal liberty.

Disability Rights or Child Welfare?

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By Mark E. Smith

 

They say that there’s always two sides to every story, but aren’t the facts still the facts? This is one of those cases – surrounding a parent with a disability, no less.

 

“A disabled mother fights again for right to raise her child,” is the headline of a circulating news story this week, And, if you’re a parent with a disability like I am, that headline is sure to capture your attention, conjuring natural thoughts of, “You mean someone, presumably a court, isn’t allowing a mother to raise her child because the mother has a disability?”

 

Then, the opening of the article confirms such a thought:

 

The first time Sabreena Westphal went to court to try to keep her children, she became a celebrity. Suffering from cerebral palsy and unable to walk or fully use her arms, she was still determined to care for her two young sons. Disabled parents and advocates rallied behind the young woman with the pixie haircut and impish smile who, at the time nearly 20 years ago, went by the name Tiffany Callo. She was the subject of a book, “A Mother’s Touch: The Tiffany Callo Story.” She rode in a limousine to an appearance on “Donahue.”

But the book didn’t come with a happy ending. Her little boys were adopted and taken far from her San Jose home.

Five years ago, she became pregnant again. And now she’s back in court.This time, Westphal, 40, is trying to prevent her 5-year-old daughter from being adopted by a couple in San Joaquin County. This time, she has the Americans with Disabilities Act of 1990 on her side and a political landscape that has changed substantially for disabled Americans.

As if those details aren’t alarming enough, it turns out the Westphal and the father of the 5-year-old have had an additional streak of bad luck, with Westphal having been hit by a car in her power wheelchair, and her child’s father being hospitalized for lupus.Surely, Westphal sounds like a mother with the world against her.

However, as one learns more of the story, another side comes out, one generated more by facts from social workers, courts, and family members than by a heavily-spun disability rights story: Westphal’s disability clearly isn’t the reason why her kids have been taken away. In fact, as reported, Westphal has a 20-year history dating back to drug use, relationship volatilities, a lack of developing a healthy support system, accusations of child abuse, passing her children off to neighbors and family members, and habitually failing to comply with the standards that social workers put in place to care for her children.

Line up Westphal, the disability-rights activists, and the media spinning the story, and it becomes obvious that they’re all overlooking the most important part of the issue: The 5-year-old child’s welfare.In fact, this story isn’t about disability or the ADA at all; rather, this is a story about a child whose needs were reportedly neglected by her parents, including a mother who failed to provide adequate support for all three of her children at different times.

I appreciate that Westphal wants her child back, using disability rights as a soapbox; however, is that really what’s best for the child?

Based on what I’ve read, of course not. The 5-year-old needs a stable, safe, functional, caring home, and, disability or not, Westphal has reportedly failed to meet those obligations, arguably through making poor decisions over and over again.

Beyond my own fatherhood, I’ve known many couples with disabilities raising children, where social workers have never entered the picture. And, there’s no secret to the success of these parents – they simply provide stable, safe, nurturing, responsible homes, where the child’s needs come before their own. These are principals that all appropriate parents follow, regardless of disability.

There’s no doubt that the Westphal story is ultimately sad all the way around, where everyone in the story seems on the razor’s edge of life. However, the real tragedy is the experience of the child. Westphal, by all accounts, has been given chance after chance to turn her life around, and has failed to do so. Yet, the child never had a chance, born into a reported unfit home, shuffled to neighbors and family, neglected by her parents, never to know the parental bonding, trust, and stability that every child requires.

And, that’s where I, as a parent, believe that this case comes into a clear, concise perspective: It’s not about disability rights in the least. Instead, it’s a case exclusively about responsible parties – family, social workers, and the courts – determining what’s best for a child.