Disability, Language

Language and Intent, Part 3 of 3: The Quiet Power of Inclusive Language

Though I fancy myself a committed Jew, I’m not always well behaved at services.  In fact, some friends would say that I’m downright snarky.  The historical targets of my snark are interpretive English readings that I find ridiculous, or liturgical choices that seem to me to be divorced from any coherent theory of prayer.  I know, I’m a snob, I should do better.

Lately, however, I’ve been snarking about something new.

By way of background, Judaism is a religion of choreography, a lot of standing and sitting, and so many times in a service you will be asked to please rise or told that you may be seated.

For most of my life, I’ve ignored this.  Jewish law expressly understands that those of us that cannot stand do not have to, and it just wasn’t a big issue.  Lately, provided that I’m in a service where the low mutter between congregants is standard, I will often mutter to a friend something to the effect of “I decline” or “I choose not to” and when exhorted to be seated, I will point out that I already am.

Frankly, this habit surprises even me.  I’m nearly 33 years old and I didn’t make this juvenile joke very often when I was 10.  I started to think about why.

In just a few synagogues where I have been, the exhortation has been changed to “please rise if you are able.”  When I first heard this, I thought it a non sequitur.  It was a restatement of an idea so obvious that I thought that it simply need not be said.

My wheelchair is self-evident.  Even for people whose mobility impairment is not self-evident, unless the Rabbi or service leader were to be replaced with Kanye West, I don’t think that anyone is going to take someone attending the service to task for failure to rise.  There is no discriminatory practice needing to be fought.

And yet, this little change was having an effect on me.  The simple linguistic acknowledgment that I, and people like me, existed in the congregation, demonstrated by a simple word choice, meant something to me.  I’ve come to realize that my snark was my subconscious reaction to feeling linguistically excluded after being linguistically included.  These service leaders had raised the bar of my expectation.

In the first piece of the series, I wrote about the unconsidered intent of poorly chosen language.  In yesterday’s piece, I wrote about the meaninglessness of even the most proper language if divorced from meaningful intent.  The little change I have described above points to the incredible power of intentional language.

As I already said, I’ve known since early childhood that Jewish law did not require me to stand up.  The people adding a qualifier, therefore, have done nothing to change my behavior (I couldn’t stand up if I wanted to) and did not even assuage a nonexistent guilt.  What they changed was the subtle societal message that the choreographers of our services and framers of our instructions just weren’t thinking about people like me.  They taught me that at least one, the speaker at that moment, had thought of me, and framed his or her words accordingly.

This felt good.  I’m 33, and that had my fair share of accolade and friendship, and yet this four word acknowledgment of my existence spoke to me at a level that I didn’t even realize, and raised my expectations.

This, then, is the message with which I would end this series.  Poorly chosen language is hurtful because it conveys negative associations, or at best a lack of thought, and should be avoided.  Formulaic language, is better than actively negative language, but is pretty meaningless without intent, and can be trumped by even the wrong language with the right intent by those who just don’t know the formula.

The most powerful language, however, is that which conveys a respect and positive intent to include.  If there’s one prescription I can give, it’s to choose your language around disability carefully.  Not carefully in order to ensure knowledge of the latest buzzword, about which I could care less, but carefully to convey the attitude of inclusion, respect and love that I know that my readers all carry and their hearts.

As long as that is the principle, from my perspective, you can’t go wrong, because your language will find a way to convey your intent.  And, if you routinely convey that intent, you may raise the bar for everyone, even me.

Disability, Language

Language and Intent, Part 2 of 3: The Difference between Person First Language and Putting the Person First

To my most avid readers: you will recognize this as primarily a reprint of an archival post on the blog.  I have reworked it slightly to fit into this series, and also assume that, since it was posted as part of my launch collection, and never had its own day, it is new content for the vast majority of readers.  Enjoy!

I was born handicapped.  Sometime in my early childhood I was briefly physically challenged and by middle school I was disabled.  I am now a person with a disability.  Similarly, I have progressed from wheelchair-bound, to in a wheelchair, to a chair user.  It may surprise you to find that the actual nature of my physical condition is unchanging, and that medically, my charts have said pretty much the same thing since 1981.  Medical science generally only changes names if it signifies a greater change.

This is something that I think we have lost in the progression of language around disability.  Ideally meant to focus on my personhood, the phrase “person with a disability” really only serves to tell me that I am dealing with someone who is both educated, and hip to the latest lingo.  It is singularly unable to tell me whether I am viewed as a person.

Now it is true.  It can be jarring to hear disabled or handicapped out of the mouth of someone that ought to know better.  Are they so indifferent that they did not bother to learn the latest words?  Yet, maybe they just did not know.  As I pointed out in some length in part one of this series, sometimes indifference tells its own story.

And yet, unlike the lack of reflection that I posited yesterday, focused as it was upon words the plain meaning of which is offensive, a failure to use “person first” language strikes me as more likely to be a function a deficit in inside knowledge rather than a deficit in reflection, especially since it is far from intuitive.

I cannot tell you how many times well-meaning individuals have been mortified upon learning that they no longer have the latest term.  But, unless you are a journalist or a Member of Congress, it is not like there is anyone teaching you this stuff.  And strident corrections seem more likely to shame them to teach.

I feel that there are other ways, mostly to do with action, where I can find out if someone sees me first as a person.

How did they treat me?  Will they work with me?  Do they seek my advice and my guidance in areas where I have experience or expertise?  Will they joke with me, laugh with me, hoist a drink with me?  Will they praise me only when I do something legitimately praiseworthy and call me out when I am insensitive or acting the fool?  These folks I now see me as a person first.

I know it even if English is not their first language and they have used the archaic word crippled, or have asked, in the way one sees with Israelis, “what happened to you?”  It is important to put a person first, but I will take the right actions over the latest words any day of the week.  Like the medical chart, I am only interested in the linguistic change if it signifies a true change in action.

Yesterday I argued that a lack of choice in language can demonstrate hidden attitudes and demonstrate a benignly ablest intent.  Today, I argue that one can use exactly appropriate language, and it can demonstrate nothing more than good media training.

To those who would champion person first language, I ask you, how certain are you that the person is first?

Disability, Language

Language and Intent, Part 1 of 3: Unintentional Messages

Just a second.  I’ll be a minute.

It’s amazing how often I hear these phrases, and I’m sure you do to, and I can’t remember one instance where the delay was actually a second, or minute.

It’s awesome.  It will change your life.  We hear statements like this so often that we don’t even really have words to appropriately express true life change and awe.

In the current American idiom, many expressions are fairly well divorced from their original roots, or their literal meanings.  I’m fairly certain that this is the normal progression of the English language, and one might think me a picker of nits (no longer referring to the eggs of lice) for mentioning it.

And yet, for loaded words, for particular expressions, that very forgetfulness, or unwitting ignorance, can become an issue of division and hurt.

He’s crazy.  She is a moron.  Virtually generic insults on the playground, and yet with such explosive potential.

Unpacking for a moment, we are reminded that crazy was and sometimes remains a derisive term for people with certain psychiatric disabilities, and moron was one of the disturbing terms used to lump, label, and dehumanize people with intellectual disabilities in an earlier era.

These loaded terms, used without intent in societal discourse, can be deeply offensive to people with disabilities, both because of their history and because of the notion that a label of a particular disability should be an insult.

My goal here is not to explore this phenomenon in-depth, because the idea is fairly simple, or to provide a primer about it, though I will direct you to an excellent list of offensive terms with a certain amount of explanation provided by Lydia Brown, a prominent autistic blogger.  Rather, it is to think about why it is offensive.

I think that part of the reason that such language is troubling is the lack of reflection represented.  Some of the items on Lydia’s list have obscure origins, but one needs no historical background to understand why using mental illness or intellectual disability as an insult might be offensive.  It takes little more insight to realize why an expression like “confined to a wheelchair” or “afflicted with cerebral palsy” might be offensive.  I don’t think many who know me would call me a confined and afflicted individual, for all I am a person with cerebral palsy who uses a wheelchair.

This, then, is my perception of the real problem that results when we take the American tendency to shy away from any sort of meaningful evaluation of our use of language and apply it to terms related to disability.  The very practice represents a lack of reflection on the underlying assumptions in the phrases.

Even this would probably not matter if disability discrimination were a relic of ancient history.  It is moderately interesting to find out that a cultural idiom results from a conflict that has been over for hundreds of years.

The problem is that the attitudes reflected in these expressions, even if not actively held by the speaker, are active in our society today and do great harm.  We still stigmatize the mentally ill and those with intellectual disabilities, and many who do not know me would indeed pass me on the street and presume me to be confined and afflicted, and we must battle those presumptions with mindfulness.

Tomorrow, in part two of this series, I will substantially reprint my earlier piece on person first language, and the importance of the attitude of the Speaker over particular phrases used.  Today I ask you to hold on to the idea that when the substance represents a lack of mindfulness of ongoing discrimination still suffered by a population, the inattentive phraseology can become a part of intent.

Think about it, read Lydia’s list, and think about the preconceptions that may be consciously or unconsciously conveyed in our word choices.  Then, let’s change our thoughts by changing our words.

Disability, Employment

The Joy of Purpose: A Hidden Benefit

I’m having a challenging year.  When I left my law firm, at what seemed like a natural moment in my career to part ways, I was looking for in-house work, and also to step up my disability consulting.  I was very excited about my next adventure, and not terribly focused on what I was leaving behind.

A year has passed, or near enough, and I have begun to understand what being a lawyer, and by most accounts a successful one, meant to me.  Certainly, it was a source of financial security, and I miss that security keenly.  Until a few weeks ago, however, it was hard for me to verbalize what I was really missing.

In early September, I was approached by an organization to come on board to help them draft a simple contract.  Over the course of the work, I got to flex my mental muscles, practice my craft, be recognized for my skill, and contribute to the needs of the organization.  And yes, I got paid.

But the money, a sum that is less than what I have received for simple research from other, better funded clients, was and is secondary.  For those weeks, I got to feel useful again, talented again, a net creator of value.

And that was what I missed but I could not have articulated.  I missed the sense that my efforts and my skills were providing real value for someone else.

When you get down to it, this is something that I have taken for granted.  I can point to accomplishments from every nonacademic period in my life from age 16 onward.  Whether as an intern pointing to specific projects, a tutor pointing to students, or, later, a lawyer pointing the clients served, I have been able to say that my life was providing particular value to a defined set of beneficiaries.

The sense of being valuable is so central to my identity that I never could have articulated it until I lost it.  It was my solace through times of difficulty, and my source of confidence to maximize times of growth and opportunity.  It framed every challenge, and every justification in my own mind for the massive investment of effort and love that others place in me.  Not because they require it, but because I need it.

As we come to the end of National Disability Employment Month, I encourage folks to explore the question of disability employment through a different lens.  The poverty of people with disabilities is a heart-wrenching but often explored topic.  Absolutely, we need employment to break that cycle.  But there is more.

Rich or poor, disability or no, I feel that there is something fundamental to the human condition about feeling useful.  Though the vast majority of unemployed people with disabilities struggle financially, there are plenty who live comfortably on family wealth, injury settlements, insurance policies or some other source.  I bet if we were to survey them, even if money is not a concern, the vast majority would indicate a preference to add value to the world with their lives.

This, then, is the ultimate value in creating a society where people with disabilities can and do work, and by work I will include anything from top dollar salaries to donated time, provided value is being created.  There is nothing quite like the feeling of being useful, of knowing what you have to offer the world, and having the opportunity to offer it.

For so many people with disabilities, despite having so much to offer, whether strength or smarts, insight or compassion, companionship or fiery activism, today’s world doesn’t offer that opportunity.  And so we are left to feel less, somehow.  Perhaps loved, maybe even cherished, but not needed.

Speaking from experience, feeling valued and needed is a huge component of an increased sense of self-worth and well-being.  Even as society benefits from having its needs met, and people with disabilities benefit from whatever tangible compensations come from their talents, we all benefit as we begin to recognize the value and each and every person.

So let’s continue our efforts.  Employment, yes.  But for those of us for whom compensated employment is either temporarily or permanently unavailable, I recommend, in the words of curmudgeons everywhere, to make yourself useful.  You may be amazed at the benefits, not just to you but to society.  And for those working on the employment of people with disabilities, think outside the box.  We talk about employment first, I want to push the envelope further and include more people by saying value first.

I have no genius solutions, I am merely sharing a little bit of recently earned self-knowledge.  Thanks for reading.

Disability, Employment

The Employment Puzzle: Maybe It Is a Numbers Game

I have heard some fair criticism lately of the amended regulations around Section 503 of the Rehabilitation Act, requiring all federal contractors to work to bring their work forces up to 7% people with disabilities.  And it’s true, targets and quotas can backfire.

On the other hand, I have seen some interesting examples which demonstrate to me the value of increased numbers in promoting the inclusion of minorities in employment, and there is some reason to believe that raising percentages might finally begin to solve the perception problem in disability employment.  To me, this is at least as important as intentional discrimination and failure to accommodate.  Let’s look at some other minorities for a moment.

Nobody that I know is concerned that Joe Biden is a Catholic, and despite all of the drama around the withdrawn candidacy of Susan Rice for Secretary of State, as far as I know, her gender was not a significant topic of discussion.

Yet, when John F. Kennedy was running half a century ago, his Catholicism was a major issue, and when Madeleine Albright became Secretary of State a mere 15 years before Rice’s candidacy, her gender was, if not controversial, at least monumental.

So what changed?

In the case of Catholicism, one could argue about the vast change in American society’s approach to religion in the last 50 years, and, one can make an only slightly less convincing argument about gender since the 1990s.  I’m not convinced by these arguments, however.

I think the changing attitudes are a result of experience and familiarity taking these concepts from uncomfortable and unfamiliar, and thus informed mostly by lack of knowledge, to concepts so familiar that they are barely noticed.  After all, Rice would have been the fourth Secretary of State to be a woman (even the second woman to be Secretary Rice, oddly enough), and, in presidential races, both of the last two Democratic tickets have had a Catholic candidate. (Three if you count Obama Biden twice.)

At a certain point, it becomes unremarkable, and that’s a good thing.

Taking it out of the political arena, I have noticed this trend, albeit more slowly, applying to women Rabbis.  Though my movement of Judaism has been ordaining women since before I was born, and the Conservative movement followed suit before I was five years old, when I was a child, women rabbis were something of a novelty.  I knew several, as my life has always been replete with rabbis, but, even for me, it seemed worthy of notice and comment.

By the time I left home and was traveling more broadly, women rabbis were no longer a novelty in my life, but it was not uncommon to hear people remark that such and such a congregation had hired a new Rabbi and to add, in a surprised tone “She is a woman!”

These days, at least in the Jewish communities in which I have lived in Boston, New York, and Cincinnati, women rabbis, at least in junior and mid-level roles, no longer seem to draw comment.  Only non-Jews ever seem to react with confusion when I tell them that my sister is a Rabbi.

This is not to say that women rabbis don’t still suffer discrimination, as they certainly do.  It’s also not to say that there is not still progress to be made, as their most certainly is, as the dearth of women in senior rabbinic positions demonstrates.  Rather, it is that we appear to have moved beyond a societal perception that the rabbinate is an all-male environment.  Even in the Modern Orthodox circles in which I sometimes travel, while there an unwillingness to ordain women as a matter Jewish law, I think that in countering a woman Rabbi from another movement is considered unremarkable.

So, how does this relate to disability?  Disability employment numbers are abysmal.  As a practical matter, this probably means that the majority of Americans do not have, or at least unaware of, any coworkers with disabilities.

It is not uncommon at social events for people to be quite surprised to find out that I’m a lawyer, not because lawyers don’t hang out in the yuppie Jewish circles that I do, but because people in large power chairs don’t fit their preconception of lawyer.  I have experienced going down 6th Avenue in a full suit, and been stopped by passersby who try to give me change, because in their worldview, as a person with a disability, I must be destitute, regardless of what my expensive clothing should be telegraphing.

Why, then, should we expect that the perception is any different in a job interview.  Perhaps not even consciously, the interviewer is likely filtering my answers through a perception bias telling him or her that I am not what a lawyer at their firm or corporation looks like.  Some will overcome this, either recognizing their bias or simply privileging my qualifications and answers over vague unease, but many others will find my candidacy inexplicably lacking, in part because that unease prompted them to so find.

Quotas, well administered, and focusing on quality of recruitment and substantive jobs, rather than just second-class box checking, are a huge factor in changing that.  Simply by drawing the connection between disability and coworker in the mind of an interviewer, or disability and gainfully employed in the mind of society, the attitude begins to change.  Familiarity breeds acceptance.

More importantly, if people with disabilities are present in sufficient number, and not set up to fail, they don’t need to be mind-blowing employees, inspiring all with their abilities, to change perception.  (This is not to say that they do not need to be competent.)

The comfort with Susan Rice’s gender was not because the average American made a reasoned decision based on the tenures of Secretaries Albright, Rice, and Clinton, (in fact, I think you’d be hard-pressed to find anyone in the American electorate who is partisan for both Clinton and Rice), but rather because, after three female Secretaries of State, covering about 75% of the time since Albright’s confirmation, the American people have become accustomed to the concept that women can occupy this role.  Those that object now are overtly sexist, rather than unconsciously so from long term associations.

Similarly, though on a much larger scale, (hence the Rabbi example) the quota system could help eliminate the disability discrimination based on unconscious perception, even as the ADA can serve as a remedy for intentional discrimination and discriminatory policies.

I feel that this has worked for women Secretaries of State, and is working, even if still a work in progress, for women Rabbis.  I thus believe that it can work for people with disabilities.  I certainly hope so, because nothing else has yet.


A Call to Action: My Fellow Americans with Disabilities, Raise Your Voices to Harness Our Consumer Power before It’s Too Late

My fellow Americans with disabilities, I need your help so that I can demonstrate our considerable market power, and present useful input to the businesses that want to sell to us.

I created a business based on three assumptions:

  1. Americans with disabilities represent a significant economic power in this country;
  2. For the first time in history, the American business community is waking up to this power, and trying to create strategies to harness it; and
  3. Americans with disabilities are ready to raise our voices, to partner with American business to provide our consumer perspective. Essentially, we are ready for business to work with us, rather than fumbling efforts to work for us.

The first two can be shown with publicly available data.

The U.S. Census Bureau tells us that Americans with disabilities control $200,000,000,000 in discretionary spend.  To give a sense of the scale that that represents, the 2013 global revenue for Apple was only $171,000,000,000.  Even if we assume that more of that money goes to consumer products then iPads, the number is staggering.

A quick Google search will tell you that corporations are beginning to move in response to this power.  In addition to the well-known stories of Walgreens and IBM, it seems like every business conference has some module on capturing the disability market.  Lots of people, some of them with disabilities, are offering their services as oracles of disability opinion.  Given their impressive client lists, I would imagine people are listening.

I applaud these efforts.  They are absolutely better than nothing.  Though I often raise my voice to lament slavish adherence to building codes without making a space truly functional, or software accessibility features which seem to be designed with no particular purpose in mind, it is exponentially better than nothing at all.  Access has improved, if not quite how we wanted it to.

Similarly, the initiatives above have created products and services better optimized for people with disabilities.  And yet, too often these initiatives seem like a shot in the dark, and even with regard to the big name ones, every person with a disability to whom I have spoken thinks they could have been done better, could have been more effective.

And they could have.  In the years that I spent at Procter & Gamble, I never saw the company design a successful product for an identified consumer demographic without engaging the input of that demographic.  Operating under the watchword, “the consumer is the boss,” listening to the voice of the consumer was the lodestone for effective corporate initiatives.  The company’s biggest successes during my time, like Secret Clinical Strength, were designed to meet an expressed consumer need.  The biggest failures (does anyone remember Scent Stories?) were invariably ascribed to experts who had gotten too far from the consumer voice.

It’s almost a given that disability initiatives would follow the same general success to failure ratio: if there is no disability voice, prepare for an abject failure, and the greater the disability voice, the greater the chance of success.

My business model is predicated on the idea that Americans with disabilities are ready, willing, and able to provide that voice.  I am almost certain that I’m right about this, and I want to share it confidently with potential business partners, but I’m having trouble gathering the proof.

Last week, I started to circulate a simple request for people with disabilities who might be interested in surveys or focus groups to go to my website, and, in probably less than a minute, give me their name, their email address, and simple confirmation that they were in fact people with disabilities.  Through my own social network, this request was tweeted to tens of thousands of people with disabilities and their families.  I received seven names.  Assuming that people are interested, my methodology is failing.

I’m stymied.  It is of course possible that this is a simple matter of time and engagement.  I don’t really entertain the idea that a demographic who has centered its movement around “nothing about us without us” is uninterested in being heard in the consumer arena.  But I could understand if, given the still active fight for Justice, and the incredible effort of independent living in a society where access and employment opportunity still languish at unacceptable rates, Americans with disabilities were reluctant to get involved in one more arena.  God knows, it sometimes feels like the need for education is endless, and could swallow us all.

But, we can’t afford to be silent.  As businesses wake up to our market power, as new federal regulations put our value as employees front and center, we have to wake up with a mighty roar.  If we want a seat at the boardroom tables were so much of the power in our society is wielded, we have to be America’s most engaged consumer demographic.  We have to be the $200,000,000,000 segment telling business exactly what we want.  Trust me, if they know, and if there’s a profit to be made, they will respond.

The alternative is that we become the $200,000,000,000 black box that nobody knows how to effectively monetize, and, after a few more years of trying, businesses will give up.  We can’t afford that.

So, to all my fellow Americans with disabilities, I ask a simple favor.  Please visit www.capitalizability.com/signup, and put your name on my list.  If web forms are a problem, please send an email to consumer_voice@capitalizability.com. Please make sure that the email contains your name, the email address at which you would like to be contacted for such an opportunity, and confirm that you are a person with a disability.  Then indicate whether you would be interested in surveys, focus groups, or both.

That’s it.  In that one step, you empower me to enter a meeting with a business client and say to that client “if you want to know more about what people with disabilities think, I’ve got thousands of names right here of people waiting to tell you.”  This is all I need to begin creating avenues for your voice.

Let’s raise our voices in one more forum as we continue to make history, to seize our place in American society.