The $29 Advocate

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By Mark E. Smith

In my recent HME News column, I talked about how, unlike in the classic 1975 School House Rock song, a bill isn’t just a bill, rather, it’s about people, not paper, where getting legislation passed is about Capitol Hill face time, convincing our elected officials and their staffs to sign-on and support disability-related legislation is vital.

Indeed, I was privileged again this spring to be on Capitol Hill – as an advocate, not just a bill – summoning support for H.R. 942, the 2013 version of the Ensuring Access to Quality Complex Rehabilitation Act. We’ve introduced similar versions for several years now (much like in School House Rock, bills low on the priority get stuck on the steps of Capitol Hill, and fall off of the calendar, needing reintroduction). However, this year’s version, we believe, has a real chance, as face time and the quality of the proposed bill seem to have converged, where our elected officials have off-the-record at least noted it as a no-brainer, namely because it serves those with severe disabilities so well. See, H.R. 942 doesn’t just help protect complex rehab technology funding, but it eliminates the “in-home-use-only” rule; it allows those in long-term care facilities to qualify for vital technology like power wheelchairs; it sets standards so that technology is only prescribed to those with appropriate conditions; and, it further elevates the education and licensing of providers. Therefore, H.R.942 isn’t just about protecting funding, but also it’s about safeguarding consumers. And, it’s a cost-saver. For example, Medicare currently spends $1.6 billion annually on pressure sore treatments. H.R. 942 ensures access to both the right seating and clinical services to help prevent pressure sores. In this one area alone, a staggering amount of long-term healthcare costs could be saved, arguably hundreds of millions of dollars in the least.

But, again, H.R. 942 isn’t about paper, it’s about people. And, on the Hill with me, lobbying, were among the most amazing advocates, from a dozen or so of us who use complex rehabilitation technology, to clinicians like Gerry Dickerson, who have dedicated their lives to elevating – and, truly, creating – the field of applying complex rehabilitation technology to increase the quality of life for those of us with severe disabilities.

However, what struck me most about this spring’s lobbying effort, coordinated by NCART, was that we all are ordinary people doing the extraordinary – there’s no magic to making a difference, just dedication and tenacity. I mean, Mickae Lee and Jen Westerdahl are both single moms (and Mickae works two jobs!), yet they scheduled and coordinated hundreds of meetings for our lobbying day, literally staying up till all hours for weeks before the conference to make sure the schedule was complete. That’s the beauty of a democracy – anyone can help foster change with good ol’ effort.

I’ve been on the Hill quite a bit, more than maybe even I presumed, as in a few of my meetings, I was greeted with, “Mark, back for your semi-annual visit, are you?” See, the way it works is that anyone can make an appointment to meet with an elected official or staff (more commonly staff), and in our case with a proposed bill like H.R. 942, we have 15 minutes or so to make our pitch – and a lasting impression.

As a Pennsylvanian, that’s usually my lobbying territory, where I met with my two senators and four congressional staffs. Sometimes I’ll sneak in my old state of California, if needed. Nevertheless, six meetings in one day is a pretty intense schedule, where the size of Capitol Hill and its buildings makes it a race from one meeting to the next. I mean, when you have 15 minutes to get from the Rayburn building on one side, to the Dirksen building across the Hill, you put your power wheelchair in high gear!

I had the pleasure of tag-teaming with Matthew Clark, a wheelchair user from Philadelphia, and he’s emblematic of what I’d describe as the truest advocate – it all comes from the heart, just a guy making a difference. You’ve likely never heard of Matthew, as he’s not in the pages of New Mobility magazine, nor does he work in the mobility industry. He’s a photographer and filmmaker who told me, ”I do this [advocacy] because it’s the right thing to do.”

And, Matthew is astoundingly good at lobbying. Going into a congressional office with him was like walking onto a basketball court with Michael Jordan back in the day – you know you’re in the trenches with the best of the best. For starters, he has an I.Q. that has to be 140 or more, able to recite complex facts and figures by the dozens, making the H.R. 942 fact sheet obsolete. And, then, add to that his wit and charm, and he’s untouchable in meetings, winning everyone over with his eloquence and sincerity.

So, as lucky as I was to end up partnered with the best consumer advocate I’ve ever worked with, I wondered how he ended up on the Hill that day? The answer, $10. As he shared with me, long-haul buses travel between Philadelphia and Washington DC, and much like with airlines, the fares fluctuate, where he scored a $10 bus ticket down, but was admittedly disappointed that it was $19 to return home. Literally, Matthew was taking Capitol Hill by storm, advocating for millions of Americans with disabilities, on his own time and effort – all for $29.

Again, everyone lobbying on the Hill that day had his or her own remarkable story. Yet, when I think about Matthew Clark, he embodies advocacy at its best: One person, one voice serving the interests of millions. And, it proves such a valuable lesson to all of us. You don’t need fame, fortune, or formal training to help create legislative change – just the self-initiative to get involved.

Empty Words

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By Mark E. Smith

The two symbolic, ground-breaking shovels that sit in the corner of his office catch my eye. One is gold-plated and the other, chrome. They’re the type of shovels that dignitaries and politicization use to pose with in a dirt patch when kicking-off a new development project. And, they’re leaning in the corner of his stately office, which clearly has not been remodeled since the 1980s, right down to worn leather chairs. But, all is spotless clean – even the shiny shovels.

I could picture him back in the day, likely slamming one of those shovels onto a board room table, and saying in a larger-than-life voice to his executive team, “Are we going to dig our own grave, or dig our way to the top?”

Yet, now he’s a kind, calm, soft-spoken older man, a proud grandfather. And, as he talks I feel a bit writer and a bit grandson. “Never trust words,” he says. “Flow charts, a good dresser, a great speaker – never trust any of it. Only trust results. When someone delivers, trust that. Trust whomever backs you in the trenches.”

And, for a moment, my eyes drift back to the shovels leaning in the corner, and I think about how true his words are, not just in business, but in life. As a writer and speaker, I’m a contradiction in that I’ve always distrusted words. It goes back to my mom and her always lying about not being drunk, my therapist would say. And, while maybe that’s where my distrust of words likely began, it runs more universally than that. I’ve learned that when we truly care about others, we don’t just say it, we show it. Show me you care about me, show me you love me – don’t just tell me. I’ve fallen for words too many times, only to be hurt by them – empty, hollow in the end, the words, me, all of it. You have, I have, we all have. And, what’s insane is that we continue wanting to hear them, the words, and believe in them – I’ll pick up the pace, I’ll make things right, I’ll quit doing it, I’ll change…. But, what’s any of it mean if there’s no action or effort behind the words?

The answer is, nothing. Here’s the fact: when we look and don’t listen – that is, when we gauge a person on what they do, not what he or she says – it’s the ultimate truth of what we mean to that person. No matter if it’s an employee, friend, or love interest, follow what one does, not what one says. Lots of people will say they’re there for you; but, who’s truly there in the sincerest ways? It quickly becomes a short list, doesn’t it?

And, yes, it’s a painful realization, but also a poignant one. See, in the process of realizing how adrift we are, alone at sea, we likewise realize who’s truly there for us, not in words, but in heart, soul, good times and bad. Words are so often an empty gesture; but, actions of the heart always prove true intent. Grab those who put their hearts and souls out there for you – hold on to them, truly trust in them, no longer adrift but anchored by them.

And, as he continues speaking, I stare at the shiny shovels, and again wonder why any of us still trust in words at all?

When a Smell Isn’t a Smelll

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By Mark E. Smith

My daughter and I were talking about the horrors of care facilities, and one in particular came up that I’ve visited, where the odor was overwhelming.

“They should hire you to fix that kind of place,” she said, with a belief in me that only an adoring daughter can have in her father.

“It’s not that easy,” I said. “See, in order to make it a better place, I’d have to get rid of the bad smell, and that’s a huge task.”

“How hard could that be?” she asked. “It’s just a smell.”

“Really hard,” I said. “The smell isn’t just a smell. It represents what’s called systemic issues. The smell is caused by much larger issues.”

“Like what?” my daughter asked. “Can’t you just get rid of a smell?”

“Not in this case,” I replied. “See, the smell is caused by overall improper care, from soiled bedding to poor hygiene care of clients. In order to get rid of the smell, you’d have to change the entire infrastructure of care.”

“How would you do that?” she asked.

“Well, you’d start with the management and work your way down – leadership is where accountability for the smell starts, but not where it ends. Every employee there is ultimately accountable.” I explained. “You’d have to change the way everything is done, retrain staff, probably fire some and hire some. But, once the smell was gone by dramatically changing the way everything is done, you’d have among the best run facilities in the country.”

“So, to get rid of the smell, you have to get rid of the real problems, and that starts with the people who run the place because they’re allowing all of the problems to happen, right?” she asked.

“Exactly,” I said. “You have to find the root causes and fix them. Someday you’ll learn in life that most often a seemingly small symptom is the result of a very complex cause – from relationships to business. … A smell is never just a smell in these cases. Always look deeper.”

The Disability-Technology Continuum

By Mark E. Smith

From my CEO to my life-long best friend, a conversation keeps popping up that’s quite fascinating. It’s what I’ve coined “The Disability-Technology Continuum.”

The disability-technology continuum, as I’ve defined it, is an extremely simple yet profound concept. It’s the fact that technology literally makes us less disabled – that is, it improves upon virtually every aspect of our lives, that when we have appropriate technology, our abilities and quality of life expand.

I can use the disability-technology continuum as a prime example in my own life toward how it works and its ultimate results. Imagine there’s a scale from 0 to 100. Zero is totally disabled, as in bed-ridden, and 100 is totally independent. Without a mobility device, I’m at 0 because, based on my disability, I’d be bed-ridden. However, if I have a manual wheelchair, my functionality increases to, say, 30 on the continuum. Yet, with a power chair, now I may be at, say, 60, and with an elevating seat added, I’m bumped up to 65. You get the idea: appropriate technology increases independence, lessening the impact of disability.

Of course, many aspects move one along the disability-technology continuum. Mobility equipment, computer technology, adaptive transportation, and accessible housing, to name a few, all play key roles in moving us from the bottom end of the continuum toward the upper end – and it’s near the upper end where aspects like education, employment, and community involvement skyrocket. And, as we move up the continuum, we don’t just win, everyone wins, as our independence benefits many, where we simply can contribute more toward society.

All of this, however, requires exactly that – societal support, where, culturally all understand the importance of supporting moving others up the disability-technology continuum. See, technology can only get those with disabilities so far. It’s societal support and acceptance that both allow and complete the disability-technology continuum. Technology can physically liberate those of us with severe disabilities, but, make no mistake, we need a society that fosters that process.

Five-by-Seven

The smell doesn’t change – it hasn’t for over 100 years. It’s the smell of urine, feces, body odor, musty hair. And it fills the halls, where it permeates everything within its path – it’s the smell of despair, stripped humanity, the ever-slowly-wasting-away of souls. It’s where some of us visit, some of us live, and too many of us die.

I am, of course, describing residential care facilities for those with physical disabilities – or, more aptly, institutions. Over the 100 years, the common verbiage has changed from asylum, to home for incurables, to institution, to residential care facility. Yet, beyond a name, fundamentally, nothing has changed – not the facilities, not our cultural practices, not even the smells. Those with disabilities still line the halls, locked away from society in literal five-by-seven-foot rooms that have fewer amenities than a prison cell – not even a commode of their own. What you’ll see is a twin bed pressed against the wall, a dresser, a TV, and a common cardboard box with one’s worldly possessions. Nine years, a woman with multiple sclerosis told me she’d been in her room – and I looked at the windowless walls of degraded paint, and thought to myself, Nine years of starring at blank walls absorbing her dignity, humanity, sanity. Nine years dying an emotional death, where she’s treated with less dignity than a convicted murderer on death row.

Now, it’s easy to point fingers and blame the mainstream for still accepting institutionalized care, still locking those with physical disabilities behind stone facades while the rest of the community drives by in luxury cars, never giving a thought to who’s hidden away in that “historic” building. And, it’s easy for families to convince themselves that it’s what’s best for their Billy or Diane, those who have severe physical disabilities, whose families know not else what to do.

However, I hold myself to a much tougher standard, knowing that I, too, am to blame. See, with a flip of a coin, I could have spent my life in a five-by-seven-foot room, where my humanity was stripped, and I wasted away, never to be known. As I tour institutions today, I see not those who should be there, but those just like me if a simple call had been made or the right question asked, where my severe disability and ultimately neglectful parents should have landed me in an institution. But, like missing a flight by moments, later to learn that it crashed, I didn’t end up in an institution. Instead, I went on to college, career, and family – a normality I could have easily never known. And, for those of us with disabilities living independent, upper-middle-class lives, we’d like to think that it’s due to our hard work or perseverance. But, it’s not. It’s just happenstance and luck, where the only difference between us and them was a cosmic coin toss, a stroke of luck that flung us down one path instead of the other, saving our lives while those just as worthy as us – our exact image – weren’t so fortunate.

And, with that reality – that the only factor that prevented me from being institutionalized due to disability was a random, cosmic coin toss – I struggle to live with the guilt and shame that consumes me: What have I done to help any of my peers who remain locked away? Who am I to sleep soundly at night in my custom home, on Egyptian cotton sheets, while my peers lay in a degraded five-by-seven-foot room, on soiled bedding, starring at windowless walls, their lives absorbed by the stench of it all? Who the hell am I to have escaped the death sentence of an institution, and not have had the presence of mind to go back and carry even one of my peers out on my shoulders?

Smashed-Up

By Mark E. Smith

For the third time, U.S. Airways luggage handlers have dropped my power chair from around eight feet in the air (off of the top of the conveyor belt near the cargo door). Fortunately, that particular power chair is like a Timex watch: After two years of use, travel, and being dropped from the conveyor belt three times, it takes a lickin’ and keeps on tickin’!

But, not without battle scars, of course. I mean, when a 300-something-pound power chair falls from eight feet onto the pavement, bad things happen. This time, the power chair landed with such a blow that it actually twisted – not bent, but twisted – some seriously-stout metal structures, destroying an armrest and back cane. Still, the power seating system and power base are fine, ready for more flights (and drops). And, because I’m part of my own power chair company, yes, I am a bit more fortunate than others because I can piece it back together, cover up the gashed areas with black paint, and be off to the next event in real time. Still, in the moment, I’m as stuck as anyone would be at the airport with a smashed-up power chair – not a good feeling or scene.

However, here’s what I really don’t understand: A bunch of people saw my power chair fall off of the conveyor belt – clearly smashed-up – and no one acknowledged it, pretending that it never happened. This time, someone parked it, tweaked as heck, at the gate counter (rather than bringing it to the plane door like they should), and the gate agent came down to the plane door, simply telling me that they couldn’t bring my chair down because it wasn’t working. Duh – it took an 8-foot tumble to the tarmac!

I really appreciate the hard work that the luggage handlers perform – it’s back-breaking, in weather extremes, for not a lot of pay. I also understand that they’re not trained to handle mobility devices, nor is the equipment that they use designed for loading and transporting a big, heavy object like a power chair. However, on a deeper level, how have the airlines created a culture of no responsibility? Call me naïve, but where are accident reports and such? How can a company’s employees and procedures damage customer property without any sort of personnel accountability? Sure, a damage claim can be filled, but that doesn’t resolve the systemic issue of zero accountability among employees – they literally can destroy your property, and no one cares. And, the slight cynic in me wonders if the airlines have determined that it’s more cost effective to just pay an occasional claim than to train personnel and create procedures?

A portion of my career involves flying, and the highlights of my life have been traveling with my teenage daughter the past few years. So, despite a bad track record, and undoubtedly more challenges to come, the rewards of air travel far outweigh the risks and consequences.

Yet, I’d still feel better if I could just fly somewhere without worrying if I’ll be mobile when I land?

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.