Shooting Hoops in the Rain

By Mark E. Smith

One of my favorite quotes is, “The true measure of a person’s true character is the effort that he or she puts forth when no one is looking.”

I often chuckle to myself when people note that they know how busy I am…. In fact, very little of what I do is ever publicly seen or known by even those close to me. No, I’m not bragging that I’m even busier than I appear, but despite what’s seen by others, much of my work is accomplished very quietly, in my solitary offices at work and home, helping individuals directly, behind the scenes. After all, when someone needs our assistance, we shouldn’t call out the trumpets, broadcast on the Internet that we’re helping someone, then run to our bosses for praise. Rather, when someone needs our assistance, we should quietly, immediately help them, understanding that our only reward is in the difference that we hopefully make in that one individual’s life. Whether anyone knows of our efforts is meaningless, and our only concern should be, Did I do everything that I could to help that person, and did I live up to my fullest potential in my servitude to others? The objective, then, isn’t to “look busy” to your boss or others, but to accomplish true achievements.

Much of my work ethic of giving my all when no one’s looking truly stems from my own disability experience. Much like you may have experienced in your own life with disability or other challenges, the foremost hardships of my living with cerebral palsy haven’t been the obvious ones that most people publicly see – that I can’t walk, that I have muscle spasms, and so on – but my far more intimate everyday struggles that no one ever sees, as with my simply struggling to open a beverage in my kitchen at night, or fighting to put on my shoes each morning.

However, what I’ve learned from my own life is that addressing such private struggles – when no one is watching – is where true tenacity and dedication are formed. Put simply, how we react to our disabilities when no one is looking is our true character, our authentic self – and a fundamental toward success in all of life.

I’ve known far too many individuals with disabilities who bask in the limelight, glad to portray a heroic persona in public, thriving off of recognition as “overcomers.” Yet, behind closed doors, their lives are a mess, privately filled with bitterness, defeat, depression, and addictions. Their heads are held high when others are watching, but all crashes when they’re alone. In ways, disability experience is a lot like celebrity, where what’s publicly seen isn’t always what’s privately lived.

Yet, if one’s going to truly succeed with disability, what’s privately lived must be paramount to all other views. Again, our true character is proven when no one is looking. It’s easy to accept disability when someone is telling you that you’re an inspiration. Yet, it’s a far more honest reality – dare I say, brutal reality – when it’s just you, in your kitchen, struggling with all your might for twenty minutes to open a beverage. How do you feel in those circumstances? Are you heroic for yourself, or do you become quickly discouraged and defeated, crumbling into a ball of self-pity?

If you’re playing your disability A-game, you should feel more energized and inspired when facing private struggles than if you were on television with millions of people applauding you for your inspiration. See, when you have the tenacity and dedication to tackle a personal challenge with all of your might when no one’s applauding – because you only want the self-satisfaction of giving life your all – that’s the character that true heroes and champions possess.

In fact, one might compare being a champion at disability like being at champion at sports. Millions of teenagers every year dream of becoming a sports champion and hero. However, the mere handful who have achieved such status over the decades all shared the same trait of having practiced their game on a lonely court or empty field long after everyone else went home, year after year. Basketball Hall of Fame player, Larry Bird’s, ritual as a teenager was shooting 500 baskets before school each morning; then, he shot baskets in-between classes; and, then he shot baskets late into the night. What’s more, Larry’s home life during that time was a disaster, living in poverty, his father an alcoholic who committed suicide. But, when it came to basketball, Larry didn’t need a screaming crowd, encouraging parents, or a sunny day; all he needed was a basketball, a hoop, and his tenacity and dedication. Lots of Larry’s peers had talent on the basketball court, but none had Larry’s dedication when no one was looking – and that solitary dedication ultimately took him all the way to the Hall of Fame.

Succeeding with disability is no different. The public can commend you, your family can encourage you, but if your strength doesn’t come from within, where you’re willing to work to exhaustion emotionally, mentally, and physically to better yourself when no one’s looking, day after day, your success will be limited. You need to out-shoot Larry Bird by practicing morning, noon, and night in your own life to succeed with disability.

I’m not embarrassed to tell you that among my own foremost solitary challenges is the commode. See, I have a very hard time transferring from my wheelchair to the commode, then back again. It’s been a lifelong challenge, one that I’ve battled alone since I was a teenager. Truly, among my foremost goals everyday is a seemingly simple but profound one: to “beat the commode,” successfully transferring on and off of it. And, let’s face it, when one of your foremost challenges is to simply perform a commode transfer, that’s living with true authenticity, a challenge where most reckon you’re better off tackling it alone!

These days, fortunately, I win more than I lose, but that transfer remains harrowing, and gets the best of me from time to time, tossing me onto the floor like an unworthy opponent, leaving me to climb back into my wheelchair in defeat, bumped and bruised. In my mind, though, that transfer is among my greatest ongoing inspirations, reminding me to never be intimidated, to never give up, to apply even more tenacity when times get tough. And, I tell myself, Dude, if you can accomplish that transfer, everything else in life is a piece of cake.

The mobility industry, public speaking, and writing are all challenging and rewarding for me; however, when it’s just me addressing my disability-related challenges alone, that’s where life really demands that I prove myself with authenticity. Indeed, it’s that sense of solitary accomplishment that we get from tackling very personal challenges when no one is looking that builds our true confidence. And, when you strive to tackle them, without any fanfare or overt reward, when no one knows of your vying and victories but you, that’s what builds true character, that’s what forms a true hero, that’s living with authenticity. An old boxing saying goes, champions are made outside of the ring.

When it comes to living with disability, be that champion outside of the ring, be that kid shooting hoops alone in the rain, be the one never defeated by the everyday challenges of disability but motivated by them. Forget about everyone else – you don’t need their recognition to be your best! – and truly live your tenacity, dedication, and authenticity every day, not just surviving with disability but to truly thriving. That is, never stop showing your disability the character that you’re made of, especially when no one’s looking.

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.