On Thursday, May 7, All Things Considered aired a report titled: “Some Very Premature Babies Can Survive With Aggressive Treatment, Report Finds.”
Pretty fired up about it, I posted a comment on the page with the report, and to my great shock, it was deleted by the moderator.
I was censored by National Public Radio!!
Having to go out for the evening, I wrote again later, apparently with a more calm approach which did not include the term “murder,” and the post remained.
Then I made another pass, resulting in the version below, and they DELETED IT AGAIN!!
First, the portions of the piece I reacted to:
SIEGEL: They survived, but did they survive in good condition and good health?
STEIN: Well, 18 of 79 of these babies survived, so you can see that it really only helped a small proportion of the babies, and of those who survived, only seven survived without some kind of significant complication. We’re talking about something like blindness, deafness or cerebral palsy.
SIEGEL: But I’m trying to imagine being the parent of a newborn at 22 weeks and being told, we could try aggressively to keep the baby alive. The odds are 3 to 1 that the baby will not survive, and if the baby does survive, the majority of such babies have some severe condition as a result. Sounds like a pretty tough choice to confront a parent with.
STEIN: There’s no question – absolutely. These are agonizing decisions to make, and these data, you know, explain that clearly – that yes, these data show that if you try, you can help some of these babies survive, and some of these babies could turn out to be just fine. But a lot of them won’t make it, and those that do make it will be left with serious complications, so this will help doctors and parents try to struggle through these horrible decisions.
And my post on the NPR site:
There is an extremely problematic — and I’m certain, a wholly unintended message — at play here.
A portion of the survivors, as mentioned specifically here, might have “blindness, deafness, or cerebral palsy” (among other possible disabilities, being the implication by extension, paralysis since 1973 being my particular variety).
Where this became terribly tricky is the suggestion that the risk of a disability could, by itself, be a valid cause to deny treatment, and that it could be ethically appropriate to allow a child with such prospects to die rather than live with the “serious complications” of a disability.
The fact that went unmentioned here is that being blind or deaf or having cerebral palsy on their own absolutely do not determine quality of life. There are a great many people who have these characteristics living full, meaningful, and perfectly acceptable lives; educated, productive at work, with families, being creative and valued members of their families and communities. This is not a rare thing, and it is actually more possible than ever in history for people with disabilities to be normalized and thrive as much as anyone else might in our dramatically transformed society.
The fact that we now have the capacity to save the life of a premie is precisely one of those transformations. Since we can save these lives, we must commit to a world in which those lives are lived. They unquestionably can be.
In the interest of making an informed decision, parents facing the emotional intensity of such a decision just following a premature birth need to be told this. The life of that child — which I’m sure we all agree must be held precious and not surrendered lightly — is at the mercy of many prevailing (but highly questionable) beliefs that having a disability by definition precludes a quality of life. This is simply not true.
A parent who is poorly informed on this point teeters dangerously on what is essentially a eugenics perspective: a child with a disability will only suffer, be a burden on their family, and on society, and therefore it is right and just to allow that life to end before it starts. This is the line we are dancing with in the essence of this report. Sadly, blatant eugenics beliefs have yet to be expunged from our culture, having once been quite popular (to the extent of sanctioned forced sterilization to prevent the propagation of disability, for instance).
There are surveys which indicate that a majority of health professionals consider a person with a disability as having a poor quality of life, and that for those with what they consider “severe” disability (the term used here) they would consider it appropriate to deny aggressive measures to save such a life. Yet people surveyed with “significant” disabilities (the preferred term) are statistically just fine with who they are and the quality of their lives, thank you, and rightly fear, based on the aforementioned studies, that they would be denied the level of life-preserving care others get as a matter of course.
As well-informed journalists who should be versed in modern day disability awareness, either Mr. Siegel or Mr. Stein should have made the point when blindness et al was mentioned that these need not preclude a high quality of life, and therefore withholding treatment on that basis alone is problematic at best.
In fact, withholding treatment because a child would have a disability is, in essence, tantamount to murder.
It is a grave ethical line we cross when we decide it is acceptable to surrender a life because a child might have a disability.
In the report, Mr. Stein says, “…some of these babies could turn out to be just fine…”.
Who says that someone who is blind, deaf, or has CP can’t be “just fine”? Far too many people with disabilities of all kinds and degrees would passionately beg to differ with the notion that their lives have no value.
Here’s the actual NPR report on All Things Considered. Listen for yourself.
People With Disabilities Made It All Happen
The current process of people with disabilities dramatically emerging into society didn’t happen thanks to the charitable generosity of others. It didn’t happen because enlightened policymakers saw the value of investing in accessibility and civil rights. It didn’t happen because business saw an untapped talent pool or a market of unspent disposable income. It didn’t happen because family members and clinicians could see firsthand that people were being unnecessarily denied their quality of life.
People with disabilities did it themselves.
I’ll never forget a comment from the late Dr. Doug Martin, who I interviewed for a profile in New Mobility magazine. Doug was a man with an Urban Design degree (and a significant disability since birth) who accomplished some stunning accessibility solutions at UCLA. He said to me, “When you put obstacles in people’s way, you bring out the militant in them.”
That’s exactly what happened. People got really tired of being told what they couldn’t do. People got really tired of being kept from what they clearly knew was possible; tired of being cast in the medical/sympathy model of disability. They had a clear vision of lives of greater independence and accomplishment – kept just beyond reach.
Ed Roberts was quadriplegic with post-polio. When UC Berkeley denied him admittance in the sixties, he successfully took the school to court – and the State of California which was refusing to pay his tuition through Vocational Rehabilitation. They said he’d never work.
While Roberts earned his degree in political science, he and other students with disabilities began providing services to expand access to the university. They were also responsible for the first curb cuts in the U.S., right there in Berkeley. Soon people around the country were looking to their model to provide similar services – at schools and in the general public.
Thus was born the independent living movement – and an entire modern disability movement.
The true poetry of Roberts’ story: in 1975 he was appointed director of the California Department of Vocational Rehabilitation. He’ll never work, eh?
Judy Heumann earned a teaching degree, but was denied a certificate. Her wheelchair, they said, rendered her unsafe in the classroom. She fought and won, too. Judy is now at the U.S. State Department, fostering disability awareness and independence globally.
There are many, many, many more notable names and stories, but hopefully you’re getting the idea here. A substantial cohort of highly educated people with disabilities like Doug, Ed, and Judy, successfully dealt with the upper echelons of power and society, skilled in advocacy and negotiation, finessing the political system to forward an enlightened disability agenda.
All of which leads directly to the signing of the Americans with Disabilities Act in 1990 (thanks to some other heroes of the movement: the late Justin Dart, and his wife Yoshiko who’s still out there fighting the good fight).
It has sometimes taken more than sophisticated advocacy. Disability leaders like Bob Kafka and Stephanie Thomas of ADAPT were more than happy to take things to the next level and lead people to chain themselves to buses or occupy offices when talk wasn’t getting anywhere. That’s how Greyhound was forced to start buying accessible buses – which they were refusing to do despite an agreement that granted them extra time following passage of the ADA.
In 1973 people with disabilities occupied the Health and Human Services offices in San Francisco to force signing of the Section 504 regulations which made discrimination against people with disabilities illegal in the Federal government and its contractors, already approved by Congress, but delayed by the Carter Administration. It remains the longest occupation of a federal building on record to this day – and the regulations were signed without revision.
I owe the custom-built titanium wheelchair I’m sitting in now to the likes of Rory Cooper, Marilyn Hamilton, Peter Axelson, and Ralf Hotchkiss, who found themselves paralyzed and assigned the standard-issue chrome folders of the day, knowing they could do better. So they did. The lead designers – and business entrepreneurs – of today’s extremely sophisticated mobility tools are largely chair users themselves.
Thanks to such people, what it means to have a disability (and my own life) has been utterly transformed. Yet the work continues. While mobility, public accessibility, technology, and civil rights protections have unleashed a huge population of people who are contributing in every level of society, access to housing is still extremely limited, people are still forced into institutions by simple matters of policy language, and rehabilitation benefits have been severely cut back. The disability community is still hard at work making change.
Of course, many people without disability had meaningful supporting roles in the process. The recently-retired Senator Tom Harkin, D-IA is one notable example.
But they didn’t initiate or energize this radical, historic change that has been occurring around us. People with disabilities did that. Themselves.
Here’s the great irony of all of this: society still tends to see people with disabilities as dependent and limited, believing that decisions should be made on their behalf by presumably well-meaning able-bodied folk who are supposed to take care of “the disabled.”
But when you look at what really happened, it is the very proof that people with disabilities are absolutely capable of the kinds of hard work, innovation, leadership, and vision that serves our society so well – in their families, their communities, and in the workplace.
In fighting for the right to inclusion, they have more than proven their fitness to contribute. For real.
It’s time we got the story straight.
The once-popular phrase was “Hire the Handicapped.”
Its tone was pretty undeniable: since having a disability is such an unfortunate thing, we should give those poor people jobs as a socially-charitable gesture.
The underlying message is that compassionate generosity should be the core drive for employing people with disabilities. Employers should make the sacrifice because it’s the right thing to do.
Well, we’ve come a long way. The term “handicapped” now appears only in certain final vestiges, mainly with regard to a type of parking spot.
The phrase we see commonly now with regard to employing people with disabilities is to “create opportunities” for them in the workplace. A great improvement, to be sure, but I need to beg the question of whether the charitable model of disability still lurks in there – albeit less overtly.
“Creating opportunity” is certainly a good thing – for everybody. We better understand that a diverse spectrum of people deserve the chance to contribute and thrive on the job. We need to start on the assumption that people with disabilities are no less a part of that pool of qualified workers.
But there’s always been an extra edge when it comes to disability. No one would question someone’s capacity to succeed at work based on being a woman or Asian or transgender, right? Disability is the only characteristic that gets equated by its nature with less productivity and success – borne out in more than one survey of employers.
What does “opportunity” mean, then, if we are thinking of a population for which we have lowered expectations? If the cultural model still has, as its foundation, that we don’t expect them to perform as well as someone without a disability, then isn’t “opportunity” still essentially a gesture of charity?
I’m not suggesting that people overtly believe these things. Not most people, at least. These attitudes persist on a very subtle level, so every one of us would do well to look more deeply, asking these more delicate questions about our view of disability and employment.
What people with disabilities deserve – and what will help the culture of any workplace tap their substantially untapped talents – is to be seen through the lens of capability and high expectations. They deserve the chance to prove themselves – and to have those standards at their tails to motivate them. No favors.
Are some people with disabilities at a disadvantage? You bet. But that disadvantage is usually not specific to the disability itself. If a wheelchair user can’t get into a building or use its bathroom, that’s an issue with the building, not their inability to walk. If a student doesn’t quite get the “soft skills” of the workplace, understanding professional standards and behaviors, then it’s probably because they didn’t get to work as a teenager or have access to internship in college, not because of whatever impairment might be an aspect of their greater whole. The opportunity they need is to catch up.
Do people with disabilities need some resources that are a little different? Well, some do, yes. But it’s a mistake to think of assistive technologies or accessible (“universal,” being the more accurate term) design as a costly burden – which some employers think of as anything but “reasonable.” Giving someone the tools and setting that fits their needs and style is not charity. It’s how you score a loyal and meaningful contributor.
We need to liberate ourselves from the notion of “helping” people with disabilities. That suggests that people with disabilities are only able to work by the grace of others, that they are dependent – as compared to worthy of investment. As long as that quality is at all part of an employer’s orientation to disability and employment, their efforts to draw on that untapped but fully-qualified resource are likely to be compromised.
We need to think only in terms of what makes it possible for capable people to make self-responsible choices to pursue their talents and interests. The “opportunity” they need is precisely the same as everybody else’s – to get the chance to develop themselves and prove who they are and what they’ve got to offer.
Anyone with clear potential is worth the investment – whatever it takes. It’s not charity. Creating opportunity for workers with disabilities is selfish, good business. As it should be.
Inspire, the definition:
“Fill someone with the urge or ability to do or feel something,
esp. to do something creative.”
How, exactly, does that work when people encounter someone with a disability – in person, or in a story on the news or Facebook, etc.?
Many people describe their experience of these as “inspirational.” I’m accustomed to that; I often hear that my life on wheels due to paralysis is “inspirational.”
Then they say, “…but I could never do what you do.”
Doesn’t that contradict the definition? Instead of being “filled with the urge” to do (or believe they could do) something (like successfully adapt to a disability), they say they can’t.
This seems to fit a different definition; Intimidate:
“Frighten or overawe.”
It begs the question: If you say you’re inspired, are you really?
There are indeed people with a notable capacity to persevere, to not be stopped by doubts, to endure frustration and setbacks, and to be so driven to reach their potential that they accomplish clearly great things. I confess to being a little intimidated by these kinds of people, myself.
It’s just not the same standard for living with a disability.
You can see proof of how doable this is by looking at the number of people with disabilities of all kinds who are out there doing what they do, in a world that is increasingly free of artificial obstacles.
Honestly, it USED to take an heroic effort to thrive with a disability, but that was becuase there was so much in the way. I had to be carried up and down stairs in college for five years. I suppose I’m entitled to some bonus points for that one, but frankly, I had to, or else I wasn’t going to get my degrees.
That wasn’t an option.
Our society really needs to get over the “Inspirational Model” of disability. It causes real trouble.
If you think it takes a rare person to adapt and thrive, then what if it happens to you? That frame is a setup for a lot of unnecessary pressure. “Can I be an inspirational figure?” If that’s what you think it takes, you’re a lot less likely to get to the other side where your life is – or at least take a lot longer to get there.
The same is true in the workplace. If you have to be “inspirational” to be seen as a productive employee, then an interviewer or hiring manager is going to believe that you would have to have some extra force of will to be able to perform well on the job. That ends up unrealistically raising the bar for plenty of qualified people.
When it comes down to it, the Inspirational Model really represents an epidemic of self-doubt. It’s a mass expression of people not believing they have what it takes to cope and adjust to change.
We really all have the internal wiring for it. People no more special than most have done it many, many times over. Myself included.
The difference is that I got the support and resources I needed. And I had people around me operating on the assumption that I was going to have a full life. These are what it takes, not some heroic power.
So it’s time to get over the inspirational thing when someone is just doing what’s possible and getting on with their lives. When you get the disability frame straight, it’s clear that it shouldn’t be such a surprise to see someone who is well-adapted. Save the “heroic” label for people who are actually doing extraordinary things.
That said, you SHOULD be inspired. People with disabilities are models of what you yourself are capable of — and you should be prepared to fight for what you need to succeed if you have to. Are you willing to open up and feel the urge to do it if your life asked you to?
Don’t miss the next
Modern Disability blog
from Gary Karp
When the spirit of Modern Disability is infused into your workplace culture, profound effects flow into your organization. This first-in-a-series article looks at a core, foundational piece of this influential spirit: adaptability.
People with disabilities of all kinds and all degrees who are out there living their lives fully will tell you that they have learned an essential fact of being human: we are innately adaptable beings. This adaptability is not something we see only in rare, inspirational figures who “overcome” their disabilities. It’s just how they do what they do. It’s common.
We adapt in a functional sense, finding ways to do what we need to do. I can’t walk, so I adapt by becoming skilled as a wheelchair user. A blind person uses screen reader technology to use a computer. A person who is deaf communicates with sign language, forming an actual culture of expression and art with it. People innovate and design and develop low- and hi-tech solutions. And so on.
We also adapt with acceptance. It’s our nature to find a frame where we feel alright about ourselves. People discover that having a disability doesn’t preclude high self-esteem, confidence, and valuing ourselves as precious individuals. Again, this is not a rare thing. It’s a common thing for people with disabilities who choose to embrace their lives.
These are extremely powerful qualities to be modeled in the workplace. When people with disabilities are part of the team, everyone else witnesses this universal spirit of adaptability. They see that it is a way of life for them.
What’s the essence of adaptability at its core? Problem solving. For people with disabilities, their orientation is to look for what’s possible, and how to make it happen. They tend to look at things in terms of “how can we?,” not “we can’t.” They are oriented to possibility, not limitation.
This is an especially important view to have infused in the thinking of existing employees. When someone acquires a disability, and they understand that disability is something to which we first attempt to adapt, the process that follows works much better — for the individual and the employer.
This is a matter of law; when someone reports a disability, the “Interactive Process” is set in motion. The worker and employer attempt to design a transitional work program in response to the disability. They seek to adapt.
Transitional work programs are designed to spare an organization from losing a valuable employee — and they work. Employment has been proven to be rehabilitative. The more people think in terms of adaptability, the more of a commitment they will make to a collaborative process of finding out how to stay at work or return to work as effectively as possible.
This doesn’t succeed simply because some legislation imposes a requirement on the workplace. The interactive process is far more likely to produce success when an employee understands disability as adaptability. That person will make a deeper commitment to the process, and not be as slowed by doubts about their ability to work with their disability.
A hiring manager who sees disability as an adaptable thing rather than a limiting thing is far more likely to recognize the value of a job candidate who happens to have a disability. What matters is finding people who will make the best contribution to the goals and mission of the organization. That manager is going to better assess a candidate with a disability if they are tuned into their adaptable, problem-solving nature.
The spirit of adaptability that disability awareness brings to a workplace is extremely good business. It fosters creativity and a greater willingness to search for solutions to problems. It keeps good people on the job rather than going off “on disability” and collecting benefits. It saves organizations from a degree of recruiting and rehiring and ramping up of a new person — who might not work out then you have to do it all over again — when a valued existing employee acquires a disability.
The spirit of adaptability helps your organization attract and keep good people, contributes to success, and saves tons of money.
Video Bonus: Hear Glen discuss his problem solving nature.
…and Why It’s About You
So what happens when an existing employee joins the ranks of having a disability?
First, the law kicks in. The Americans with Disabilities Act requires that an employer initiate the “Interactive Process,” a bureaucratic sounding term which is really just about figuring out whether or not and how someone can continue to work.
As a disabled worker, you also have a right to “modified” or “transitional” work, to give you the chance to stay on the job and get back to full employment.
Hold on now. Before you click to go somewhere else in boredom, let me get to the heart of why this is a centrally important topic for you personally.
Let’s say it’s you, and you’ve just lost some hearing or vision from an illness, or you’ve injured your back on the job, or you sliced off a couple of fingers in the kitchen (just a few of the almost infinite number of ways we fragile humans can become impaired). What would you want? To be sent off to collect benefits while you deal with having your life entirely changed, possibly going through medical treatment, and wrestling with a foreign and not-always-supportive bureaucracy, disconnected from the work and colleagues that are nothing less than a major part of your very identity?
Probably not. You’d want to keep working if you could. You spent years studying or training, and years getting good at what you do. You’re connected to a professional community, or you treasure the social community of the workplace, where you spend more time than you do with your family. Work is a source of being productive and valued, not to mention a source of income that you’ve actually earned.
Now let’s say you’re a manager or business owner. What would you want? To have this person off the job entirely, having to hold their job (for at least twelve weeks, under the Family and Medical Leave Act), pay for a temp replacement (who won’t do the job as well), or make others take on more work, possibly paying overtime or burning them out? Then if the disabled worker doesn’t return, you need to recruit and interview and hire and train and wait for a new person to ramp up, then possibly do it all over again. Sound good?
Probably not. It’s a huge hassle, and very expensive. Period.
Here’s the good news: work is rehabilitative. When an employer does a good job with the interactive process, when everyone involved (employee, employer, physician, insurer) collaborates, then that worker is more likely to stay on the job, and will get back to full employment sooner. The data is already in. It’s true.
Not for everyone, of course. Some cases are complex and difficult. But it’s clear that the best path to what everyone wants – a worker retaining the self-esteem, sense of productivity, and social connection to their work community; business keeping experienced workers and saving money – is through committing to the Interactive Process, a spirit of adaptation, and giving people every chance there is to get fully back to work. Even if they have to sort paperclips for a while to get there.
This falls under the banner of “Stay-at-Work/Return-to-Work,” a concept that is the focus of a global Disability Management movement. They understand that thinking in these terms is good for the individual and for business.
My favorite part: the business community is, in essence, embracing the priorities of the disability community. Disability advocacy has long focused on the “Independence Model,” seeing a person as more than their impairments, looking at their ability and potential, not their limitations. Now business is getting on the same bus, because when you look at potential and think about how someone adapts, you get to keep good workers and save money.
The amount of lost quality of life for workers, and the amount of money wasted by business is immense. This is a disability issue that strikes directly at what everyone cares about most. “Going on disability” as a first line tactic is a proven mistake of thinking. The law and the Interactive Process is how we all get the best chance at achieving the independence and success we all want.
I’ve always had a problem with the phrase, “The Disabled.”
First of all, it’s essentially meaningless. What does it really tell you? Specifically?
Nothing, if you take a moment to think about it.
The people who could be said to fall under the category of “The Disabled” is immense; too immense to be contained in a single phrase. We’re asked to include people with such significant cognitive and physical impairments that they require 24/7 support, along with people like me — paralyzed, so clearly I have a disability, yet I’m professional, active, self-supporting, and as fully independent, if not more, as many people who can walk.
I’m by no means an isolated case. LOTS of people with disabilities reside on the active and vibrant end of the scale.
What’s the point of using a phrase that describes such a hugely broad spectrum of people? When you read it or hear it, what’s it supposed to mean? Who is the writer/speaker actually referring to? Towards what end? A phrase that is so broadly indefinable can’t communicate with clarity.
As the reader, you’re left to figure it out on your own, thrust into the risky business of inference. For me, as a writer, I don’t want you to have to fill in the spaces on your own. I want to be clear, and I want you to get what I mean.
Which is why you’ve never seen the phrase “The Disabled” in my writing — unless I’m commenting on the phrase itself, as I am now. And I’ve got plenty more to say about it!
When you hear or read “The Disabled” you’re unlikely to stop and think about what it’s supposed to mean in whatever context it’s being used. You’re going to unconsciously draw on the automatic meanings attached to it, the connotations, the stereotypes. Here’s what I think people get when they encounter the phrase.
They get a picture of a population who needs to be taken care of. “The Disabled” suggests a group of people who can’t fend for themselves. Every time I see or hear the phrase I feel the social stereotype deepened, steeled, reinforced that disability is a state of being that precludes independence and being self-supporting — much less being creative, productive, or great in bed, for that matter. The other end of the scale, the population where I reside who have no need to be taken care of, is completely missed.
“The Disabled” require, if not demand, money from the government for entitlement programs, and impose the cost of accessibility in our built environment. It’s one of the most common places we see the phrase, in news reports about government policy, about spending cuts in hard economic times i.e. “Programs for the disabled.” The implication is that people with disabilities represent a pure cost to the economy, give nothing back, and if the “Angry Cripple” stereotype is at play here, then we expect to be well fed while gnawing down hard on the hand doing the feeding. Again, I’m not included. I don’t get, much less demand, any government supports. (My health insurance doesn’t even cover any of the cost of a wheelchair for me.)
I imagine many people consider “the disabled” a burden on our society, yet accept (begrudgingly, perhaps) the social obligation to “do the right thing” by them. I imagine people assuming without much thought that the “right thing” represents some kind of compensation for the suffering of their impairments and limited, difficult lives.
The use of the phrase “The disabled” actually precludes the real conversation we critically need to have, namely that disability policy is not just about helping people who need it (and their families) meet basic needs. Wise disability policy invests in people with disabilities living as well and independently as possible, exactly so we’ll properly apportion money for the people who really do need caretaking.
I can tell you what got me worked up about this. It was Barack Obama’s second inauguration speech. It was a pretty good one on the whole, I thought, but he failed on the disability measure this time, having done not so badly in the past.
The only mention he made of disability was this: “For we remember the lessons of our past, when twilight years were spent in poverty, and parents of a child with a disability had nowhere to turn.” The only mention.
The implication is pretty clear, isn’t it? A child with a disability is a burden on a family, and they need outside support to ward off poverty or whatever other horror you’d care to imagine. Nothing in his statement even remotely implies that these children with a disability could grow up with self-esteem, explore their talents and interests, look forward to a future as an active, engaged person who functions in every milieu of our society and their community. No. They are “The Disabled.” They need to be taken care of by their parents — who therefore need to be taken care of by our government. By tax dollars right out of your pocket.
I’m asking you to respond very differently whenever you encounter the phrase “The Disabled.” Yes, as an ethical society we want to provide for people who truly cannot provide for themselves. How we treat that slice of our human family speaks volumes about the values that underlie our society.
But remember that “The Disabled” doesn’t begin to describe the growing and emerging population of people who happen to have disabilities who don’t collect entitlements, and are anything but a burden to their families. They are entirely worthy of our making an investment in the full and independent lives that we are all “entitled” to as members of a free, democratic society.
Originally posted October 16, 2012 for Ekso Bionics.
When you first acquire a disability, it’s just not possible to imagine adopting the identity of disability with pride. In the beginning, identifying with disability at all is deeply infused with stigma. In the beginning there is only loss. There is nothing to take pride in, only the deeply uncertain mire of coping with a primal sense of trauma, and a vision of the future that has gone dark. Of course people resist it — at first.
We also resist adopting disability identity as long as we feel we have the potential to recover — or are holding on to the hope for it. Warding off acceptance and identification with disability is, for some people, an important part of the early process, giving recovery every possible chance. And sometimes it happens.
Temporary disability is not necessarily a path to pride, though it’s often a path to a rich quality of empathy and understanding of the disability experience. However it turns out, there’s always some benefit to mine.
In the initial period following my paralysis, I experienced a nominal amount of recovery, regaining use of select muscles in my upper legs. But in time it became undeniably clear that I would not gain the muscle function and control it would take to walk. I realized that I should get on with my life, regardless of what degree of recovery I made. In fact, I already was out there doing it. I was primed to discover disability pride.
Time does heal, as it turns out. As a person moves forward — assuming they get access to good rehab, to optimal mobility equipment, and make a personal choice to move forward and find out what might be ahead beyond the darkness — their perspective on identification with disability evolves.
The process usually starts by discovering that living with a disability is substantially a matter of method. I spent seven weeks in rehab. I got trained how to live as a wheelchair user. I’ve achieved what I consider mastery of living with paralysis; what I do has become the natural way I function. Wheeling is normal for me, and I have a very refined sense of space, curb heights, and turning radius. (In fact, it’s helped me get really good at parallel parking!)
When you get an initial taste of that, you start to sense that there actually is a vision ahead that just has yet to take shape — and that you absolutely have a lot of influence over how that vision takes shape.
This recognition that I just had stuff to learn took some of the edge off the tragedy of becoming paralyzed at the age of 18 in 1973 (you do the math). Life as a wheelchair user was going to be more doable than I feared. I was seeing people living evidently full lives on wheels. I figured if they could do it, so could I.
I still had a way to go to get to “disability pride,” but disability as irredeemably tragic loss was gradually but surely falling by the wayside.
I returned to school, studying architecture in a building that was inaccessible, as it happened. Carried up and down steps to study architecture (note the irony here?), I got a real taste of my capacity to do what I had to do to work toward my goals.
I didn’t feel special. I felt witness to a capacity in myself that is universally human. My experience of paralysis was the catalyst for this discovery, and it was truly profound. There were aspects of the disability experience which were deepening me. Positive things.
It was also eminently clear that everyone else (“society”) had no idea how living with a disability worked. Early on I cared a lot about they thought. I needed them to know that I was active and independent and could open doors by myself. But since people around me typically got it wrong (and still do), in time I became less concerned about how others saw me. I was gaining a firmer grip on my own sense of self on my own terms. For an eighteen-year-old boy, this was no small thing. In fact, isn’t it the journey we’re all on?
I was succeeding at living with a disability. I was manifesting a deeply human drive to reach for what life was possible, and it turned out that a very great deal of life was possible. The fact that I didn’t have much choice in the matter (about being paralyzed, that is) didn’t dilute the fact that these adjustments and insights were profoundly meaningful. I was, in effect, forced to discover the miracle of my own innately human power.
As the years have advanced (42 and counting now), my point of reference to walking has drifted into the background. I outnumbered my days walking when I turned 37, having been eighteen and a half when I was injured. I had lived more than half my life with a disability, and my disability identity had become primary, my life walking a now smaller part of the whole. My orientation looking back on the life on wheels that I’ve lived — a long way from perfect, I assure you — is to contemplate what I’ve accomplished, not what I’d lost.
I had done way more than merely survive. I didn’t give up, I pushed beyond comfort zones, I’ve drawn on the miracle of my humanity, accumulating experiences I clearly wouldn’t have had on my feet. I had plenty of cause to be proud. Not as an egotistical conceit, but as a recognition of my value in the context of my disability.
And knowing the number of people with disabilities that I do, I can promise you that I’m no exception, that I’m not rare in this sense. Literally millions of people would repeat their version of this perspective for you.
People with disabilities have shown what they’ve got. Committed to living the visions they see for themselves, people with disabilities have designed the incredibly sophisticated wheelchairs we use, fostered a wide array of assistive technologies, blown open recreation and athletic possibilities, and fought for changes in policy and law.
People with disabilities have fought for accessibility and civil rights protections under the law, people have paraded in the streets, occupied buildings, and chained themselves to buses. There are people who worked and studied and gained the sophistication it takes to sit at tables as equals with legislators and executives.
They have changed our world. And you better believe they take pride in it.
Is it fair to say that to succeed in business you must keep a clear view of the environment surrounding your organization? You need to understand the current state of your market, your clientele, and keep your eyes peeled for any resources which will help you achieve your goals.
It’s a tough process, this keeping up with reality, especially given the ever-accelerating pace of our changing world. But however good a job you do of it, having a clear picture is not enough. To get aligned with changes—and embrace the new opportunities they represent—the very culture of your organization must adopt new core beliefs—and let go of old ones. That’s the hard part.
Disability is just such an issue. A profound transformation has occurred around what disability is and what it means; a transformation that has yet to be seen clearly, much less integrated into workplace culture. For an already substantial—and growing—segment of people who can be considered to have a disability, prevailing societal beliefs simply don’t fit the reality.
An objective look reveals clearly observable and undeniable changes which are still unfolding on a scale never before seen in our entire human history. Workers with disabilities are:
- More healthy (more are surviving, in fact)
- More mobile, including local transportation and travel
- Functioning in a much more accessible and adapted world
- More independent and active
- More highly educated, and therefore career-oriented
- And more empowered by technologies
… in our information economy where physical capacity is much less a requirement.
As a result:
- People with disabilities represent a substantial, fully capable, and untapped segment of the labor pool.
- People with disabilities have already-considerable and growing spending power. They are your clients and customers.
Yet, a combination of deeply ingrained stereotypical beliefs, combined with our own assumptions, continues to define our notions of disability. Through these lenses, the actual capacity and potential workforce contributions people with disabilities are in a position to make are grossly underestimated. They are real people with real abilities, real goals, and a real drive to excel. They possess the readiness to risk, and to be held to the same standards as any other employee—or leader.
This new model of disability is trickier to embrace because the word itself has powerful connotations in the workplace; disability literally equals “can’t work.” One “goes on” disability. This language disconnect is in direct contradiction to the notion of disability as a feature of an individual; much less an advantage.
The objective fresh look I’m urging here will make that case; a disability does not define the whole of a person. A disability by no means automatically precludes someone having a great deal to contribute. They might accomplish it in a different manner with some different tools than someone else, but no less effectively.
Even if one allows that disability doesn’t necessarily preclude the ability to work, then there is another layer to the problem: it means “accommodation” and compliance. Costs. Dollars. Any way you slice it, in the eyes of workplace culture, people with disabilities are less likely to be seen as aligned with the priorities of the workplace. They are too often thought to be expensive, productively and financially, or another compliance burden.
Reality simply doesn’t jive with these assumptions.
While there certainly are people with disabilities who are not capable of full-time work, to assign that conclusion to the overall category is a grave business error. If someone has gone to the bother of getting educated, setting goals for themselves, and seeking employment, they deserve to be objectively assessed for who they are and what they have to offer. And, are probably well able to perform.
Getting this wrong is expensive.
You could miss a stellar employee, simply because a hiring manager is operating from obsolete models. IBM got it right when they hired a brilliant Russian mathematician named Dimitri Kanevsky who happens to be deaf and mute. Kanevsky had to fight in his native Russia just for the right to pursue his Ph.D. He has since been responsible for the creation of speech recognition technologies, which have brought IBM literally billions in royalties.
Yet, a U.S. Department of Labor study found that nearly half of employers surveyed had doubts about whether a worker with a disability has the skills or the ability to be productive. Such an organization will never see the potential of a Dimitri Kanevsky.
There are plenty of stakeholders in your organization who get this. People on your Human Resources or Diversity teams not only understand the issue, but will tell you stories of frustration, having tried to hire or retain workers they know to be of value. They hit the disability assumption wall, and often report that direct hiring managers are the bottleneck. These people will urge that your workplace culture be nudged towards reality with quality training programs.
The presence of a disability is no longer a characteristic that limits. It is something to which one adapts, something which often fosters a creative, innovative, problem-solving spirit. Something which, as part of a whole person, is part and parcel of setting the boundaries of one’s potential. It is part of life, and for the people with disabilities seeking work, it is truly and plainly just their normal.
When your workplace culture is able to spot the people who fit this model, then your organization will benefit—very likely thrive—in new ways, thanks to the unique contributions workers with disabilities are inarguably ready and able to make.
This is not about “Hire the Handicapped” anymore. It’s not about social sacrifice. It’s about being current with the world around you. It’s about good business.
Originally posted for The Conference Board’s Human Capital Exchange area on April 25, 2012.