Worth Paying For: Winning in the Fight for Inclusion by Losing My Very Last Argument with My Father

My father was right, it’s amazing what happens when you light the fire. In the wake of the speech, people have begun to approach me about going on the road to light the fire elsewhere, to speaking congregations and in camps, and I hope also in secular environments, to facilitate discussion and action as probably as possible. I would like to dedicate myself to this mission.

In order to do that, I need my basic financial needs to be met for the next 12 to 18 months.

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Remembering My Grandmother on the Sabbath of Song

Remembering My Grandmother on the Sabbath of Song

Last week, I raised my voice in full in that Sabbath of Song, in my aunt and uncle's unfamiliar synagogue. I mourn my grandmother, whose memory blesses me every day, but I think her for her wisdom and support, and I thank God for giving me the opportunity to honor her memory on the Sabbath of Song.

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A Little Fire for the Engine of Change: The Driving Power of Love and Outrage

I’m not exactly sure when I began to view emotion as an obstacle to my advocacy.  When did it become the case that I viewed myself as a less effective advocate if I was “too emotional?”  When did a potential ally, or fellow advocate become someone that I couldn’t work with because he or she “felt too strongly” about an issue? I’m not sure when, but I think that I understand why.  Most of the important issues on which I advocate, from personal care and healthcare, to employment and consumer strength, have rational, policy-based solutions.

Some emotions, most notably, pity, fear, bitterness, or revulsion, really get in the way of these solutions.  Pity or revulsion can devalue the very individuals whose needs are most at stake, while fear and bitterness can alienate potential allies before ever extending a hand.

And yet, passion is the strongest human motivator.  In my hurry to dismiss destructive emotion, I’m beginning to believe that I have been too quick to dismiss the important role of constructive emotion in bringing change.  Laws can change individual behaviors, but it is hearts that change the world.

So here is my emotional prescription: I invite advocates for inclusion to embrace the twin emotions of love and outrage.

This combination, and the idea of productive outrage, might be counterintuitive to some, but bear with me.  Let’s start with love.

Love is an incredible driver of proactive inclusion.

Years ago, as my sister was searching for an apartment in Brooklyn, I was living in Cincinnati Ohio, with little ability to afford plane tickets.  Though not eventually successful, my sister searched tirelessly for an accessible apartment that she could afford.  I did not yet live nearby, and it was unlikely that I was can be a regular visitor, but it was important to her that I could get into her house, if the opportunity arose.

Similarly, upon moving into their new home, my brother and sister-in-law immediately undertook, at significant expense, to build a ramp.  This, even though when we had lived a mere 20 blocks apart, our busy lives had allowed for a visit perhaps once every six months.  Again, it was important to them that I could get into their home, whether or not there were immediate plans for me to visit.

Most recently, my cousin bought a home in Key West Florida, and before she had shared the news of the purchase publicly, she called me delighted to share that the home was accessible and that I could visit whenever I wanted.  Given both of our financial situations, we expect that this visit is a long way off, but still I was in her mind when she purchased her home.

The common theme here is not particularly complicated.  My siblings and my cousin love me.  They want the opportunity for me to be a part of their lives to be built in, not addressed only when there is an occasion.

This type of love drives a lot of the allies of the disability movement.  Parents who want access and dignity for their children, and children who want to be able to share their world with their parents.  Be it these, or siblings, or spouses, or dear friends, it seems to me that almost every time that I meet an inclusion advocate who is not themselves a person with a disability, their advocacy is born of some connection of love to a person with a disability.

Instead of running away from that connection, I propose to grow it.

The Judeo-Christian Bible commands us to love our neighbors as ourselves. Endless reams of paper, or bits and bytes in today’s age, have been spilled on the meaning of this injunction, and I don’t propose to unpack it today, especially since my thesis is not a religious one.  Rather I propose to paraphrase it.  I propose to suggest that we extend some measure of the love that we would extend to the friends and family described above to our community of neighbors.

This is a hard prescription.  I am essentially asking for each person to embrace a love for a hypothetical person that you haven’t met, and to make your places and programs inclusive because you love them and want them participating in society, even though you don’t yet know who they are.

Certainly, it’s difficult, which is why I presume that the ancient moral code enjoins it.  It’s unnecessary to order those things which people do naturally.  At first, it might even seem nonsensical.  And yet, it’s not really so much of a stretch in this instance.

We, in the disability world, acknowledge that disability is a club that anyone can join at any time, and that everyone, should they be privileged to live long enough, will join.  Today, we talk about the hypothetical stranger.  Tomorrow, it may be your aging parent, or a beloved sibling or spouse with sudden illness or injury, or your newborn, beloved and beautiful, while diagnosed with something making her different.

I guarantee you that love will drive you then, but maybe, just maybe, we can try to get there first, embracing some empathy before it becomes personal.  And maybe, then we can begin to embrace people before they ask.

From this context of love, I think it becomes easier to understand what I mean by outrage.  If you love someone, and the door is figuratively or literally slammed in their face, whether by physical sensory or intellectual access, or simply a lack of opportunity, it is not a stretch to think that you would be outraged.  Certainly, you would be outraged if they were subject to violence, or brutality.

And yet, every day the persistent exclusion of people with disabilities is met with resignation, sadness and regret.  Even I can only summon outrage when a person with a disability is murdered by a parent or caregiver, as happened so recently to London McCabe, or strangled by police, as in the recent case of Robert Ethan Saylor.  It is much more common to react with grief than outrage

I’ll be releasing another piece on this specific idea within the next few days, fully extolling the virtues of outrage, but for now I’d like to focus on outrage is the flipside of love.  It is hard to be outraged at the exclusion of the faceless other, but easy to be outraged at the exclusion of one whom we love.

The bridge, then, is to try to empathize with the excluded other, to love them, or at least realize how easily they could be one of our loved ones.  I question the people who claim to fight for justice simply because of an intellectual conviction that it is the right thing.  I think that the best lawyers for social justice recognize that the people for whom they advocate are simply themselves, if life had gone a little differently.  “There, but for the grace of God, goes me.”

This empathetic outrage, as I will argue for more fully in the next piece, is critical to a true push for change.  Not for counterproductive bitterness, or for blame for the artifacts of exclusion which are so often left over from an earlier time, but for urgency.

The things about which we are sad, we hope to someday change.  The things about which we are outraged, we will not rest until we find a way to change.  With so much work to be done, we need love, with its accompanying outrage, to fuel the engine of practical change.

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Welcomed Without Asking: Making Our Communities Inclusive to All

I reject the idea that forcing people to identify is necessary or right. Certainly, at the very least it creates awkwardness and stigma. In a worst-case scenario, it gives license to exclude from a community of support simply because someone isn’t carrying the right (metaphorical) paper. I posit that a truly inclusive community would strive to broadly accept the habits and behavior of its members, without requiring an identity of disability.

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Cartographers Needed: Looking to Draw a Roadmap for Change

I believe that for the largest and most intractable problems, grander scale solutions are needed. I don’t have them, so I can’t propose them, but I’m asking for them. Join me in starting the dialogue, that together maybe we can find the answer.

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Crowdfunding Disability: Pay for the Change That You Want to See in the World

I know that people like to read what I write, because they tell me so at length. I know that people are moved by my speeches, and my perspective, because they tell me so. What I don’t know is if people attach sufficient value to my writing and speaking and advising to provide the funds to allow me to continue. I started this piece, however, by saying that crowdfunding allows us to use our resources to enable work that we think is important. So, again, if I were to set up a crowdfunding site, what might you give? More than that, what might you want? My understanding is that most successful crowdfunding campaigns offer clear benchmarks for their funders. So, in exchange for your funding, what do you want me to write about? What and where do you want me to speak about? What else do you want to see me doing?

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Honoring Our Families, and Ourselves: Refining the Narrative of Families of People with Disabilities

Honoring Our Families, and Ourselves: Refining the Narrative of Families of People with Disabilities

I think that the discomfort is that the narrative somehow assumes that all successful people with disabilities come from strong families. Some do, some don’t. Those who do usually appreciate their good fortune, and those who don’t have found other ways. I think then that the key is not to downplay the role of family in the success of certain people with disabilities, but to avoid fitting individual lives into a mythos in which they do not fit. See the person, not the myth.

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Saving the World, Over and Over, One Life at a Time.

“Whosoever preserves a single soul of Israel, scripture ascribes [merit] to him as though he had preserved a complete world.” I have known this quote from Mishnah Sanhedrin 4:5 since literally before I can remember, which is to say that I literally do not remember a time before I knew it.  I even sang it as a child in a catchy tune at summer camp.  And, while the intellectual idea of the limitless value of one human life is a concept with which I have been comfortable since I was a teenager, I think that I sometimes lose it in my work.

As a consultant to corporations and nonprofits, and a former federal official, having the greatest impact for the most people is a watchword, and it should be.  And yet for all the talk of maximizing numbers, it’s nice to have a wake-up call about the power of helping an individual.

I have been privileged, since I moved to Boston, to have multiple interactions with the work of the Ruderman Family Foundation.  I have been honored to write, honored to consult, and honored to share whatever knowledge I have to contribute to important work.  Because I am something of a policy wonk and a technocrat, much of this discussion has been big picture.

Last week, however, I had the opportunity to experience the work of the Foundation through a different lens.  I had the dual experiences of my first meeting as a member of the Jewish Services Committee of Jewish Vocational Services in Boston, under whose auspices is found the RFF sponsored Transitions to Work Program, and of attending Sweet Sounds, the annual Gala of Gateways: Access to Jewish Education, another program made possible by the Foundation.

In both situations, I heard deeply moving personal narratives from parents whose children’s lives had been completely transformed by these programs, from parents on the Jewish Services Committee whose son had transitioned from dependence to employment, to the moving story of Gateways parents who had relocated from New York so that their daughter with significant disabilities could have the Jewish education that was such a deeply cherished value for them.

Two lives in their own way saved.  Twice the entire world saved.  To hear these stories, to feel these stories, one cannot think that they were anything less.

We continue to strive for systemic change.  I would like to see comprehensive employment programs like Transitions replicated throughout the country.  Even more, I feel that the work of making Jewish education and Jewish heritage accessible and available to all Jews is a sacred mission, and that the Jewish world should be committed to expansion of Gateways style programs and services to its every level and facet as a moral imperative.  But these are big picture goals, and focus exclusively on them risks of securing the tremendous power of each individual experience.

So I honor the work of the RFF, as do so many, because of the cumulative transformative effect on the lives of Jews with disabilities.  But, I also honor it, and others like it, for the incalculable value of each life so transformed.  There is more to be done, and I have great confidence that the work will continue, but at this moment, I honor all of the worlds already saved.  Kol hakavod.

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A New Day for Disability: Bipartisan Opportunities and the Road Ahead

Starting with the mantra that I learned on my first day as a disability activist, from my boss who had worked in George H.W. Bush’s White House, disability is not a partisan issue, or at least it shouldn’t be. The ADA was a collaboration between Reagan appointees, Democratic and Republican Senators and members of Congress, and activists of all stripes and parties. It was enthusiastically signed by the first President Bush.

Disability, tied up as it is in questions of human dignity, ennoblement and opportunity, is an issue where individuals of every political philosophy can find resonance.

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Votes, Violence, and Value: A Plea to Recognize the Basic Worth of the Lives of People with Disabilities

I voted today. It was no big thing, really.  I went out my back door to my polling place, located about 1000 feet away.  I was looking around for the entrance and saw another gentleman in a wheelchair approaching the building, and asked him if he knew where it was.  He said I was in the right place, and that I could follow him in.

As we rolled in together, chatting amiably, he said “and it’s fully accessible.  We don’t ask for much, just to be able to get in.”  Once I did get in, the experience was very smooth.

My polling place has this handy touch screen machine that filled out my ballot for me, far more convenient and less intrusive than the cumbersome process from my polling place in New York where two poll workers, one Democrat and one Republican, would have to sit with me while one marked my ballot.

I used the machine, handed over my ballot, and came home planning to write a blog post about progress, contrasting the New York process and the Massachusetts one.

Then, I remembered a Facebook post from my wall this morning, and autistic activist friend who wrote, in in response to the horrific murder of the six-year-old autistic boy thrown off of a bridge by his mother “You want to know the most basic thing you can do for autism acceptance?

STOP F****** KILLING US.”

Accessible polling places are important.  The franchise is fundamental to our acceptance as citizens.

A basic right not to be murdered, though, is fundamental to our acceptance as human beings.

Now, you will argue with me that the murder of people with disabilities is already illegal, that the seemingly endless stream of grisly murders, especially of people with autism and intellectual disabilities by parents or guardians, is already illegal.  You will say the same about the fairly frequent stories of law enforcement officers using excessive and sometimes deadly force on people with sensory or psychiatric disabilities who react to approach or arrest in ways that surprise the officer.

There is that.

But every time one of these stories is reported, some subset of voices, hopefully a minority, talk about how it is justified.  They tell us that we can’t understand how hard the perpetrators of these crimes had it, what they were going through.  Some will even label this a tragedy, but not a crime.

Homicide doesn’t occur in a vacuum.  Almost every homicide has precipitating factors, which can range from horrific abuse, to unspeakable provocation, to a systematic socialization in an unacceptable moral paradigm.  There are very few killers who have no answer to why they kill.

Sometimes our justice system allows these factors to mitigate sentences.  Sometimes we recognize that circumstances might temper punishment.  As far as I know though, nobody ever tries to argue that these factors obviate the criminal nature of the homicide.

Yet, certain disabilities, like autism, seem to be fair game for this argument.

How can that be?  To me, it can only be with a subconscious degradation (I’m deeming it subconscious to give all who hold this perception the benefit of the doubt) of the humanity of the victim.

Many would agree with the statement that self-defense or the immediate defense of another are the only justifications for the murder of another human being.  If the same person can entertain a gray area around people with certain disabilities, they are applying a different standard.  Certainly, the media discourse seems to imply such a standard.

I voted today, and that’s important.  I’m glad to be enfranchised, and I salute the work of all of those that push to expand the franchise to the many Americans, with disabilities and other minority statuses, functionally or actually denied the right to vote.

But, it’s easy for a privileged professional with a physical disability, a definition that fits me and which I believe would have fit the individual who showed me to the polling place, to lose sight of how low the bar is set for many of our less privileged brothers and sisters.

The gentleman who showed me to the polls said that all we are asking for was to get in the door.  For many of us, the goal is so much simpler, “stop F****** killing us.”

Stop killing us.  No matter how many times I repeat it to myself, it doesn’t lose its powerful simplicity.

Most of my readers can’t directly stop any killers.  But you talk, and you write, and you vote.  You, too, can influence the changing perceptions of society.  So, the next time a tragedy like this comes to light, and, sadly, there will be a next time, change the dialogue.  Let us not let compassion for the difficulty of others eclipse the fundamental value of a human life brutally taken, which is never okay.

Call people on the attitude.  Get them thinking.  When there is the opportunity to influence change agents, get candidates to commit, and exercise your votes for those who recognize the value of the lives of people with disabilities.

From my electronic voting machine, it can feel like we have come very far.  From these news stories, it can feel like we are nowhere at all.  So let’s take the first step.  Recognize that humanity is a basic attribute regardless of disability, and demand that people, “stop F****** killing us.”

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The Many Ways and Many Whys of Speaking Up: How We Can All Take a Lesson from Tim Cook

Last week, Apple’s Tim Cook publicly acknowledged that he was gay.  As Mr. Cook’s words clearly demonstrate, he didn’t come out, because he hadn’t been in a closet. Said Mr. Cook, in an article that he wrote entitled “Tim Cook Speaks up”, Mr. Cook points out that, for years, he has been “open with many people about my sexual orientation. Plenty of colleagues at Apple know I’m gay,” But, as Mr. Cook said, he didn’t publicly acknowledge it.  He didn’t, in his words, speak up.

His reasons strike me as easy to understand.  He says

“Privacy remains important to me, and I’d like to hold on to a small amount of it. I’ve made Apple my life’s work, and I will continue to spend virtually all of my waking time focused on being the best CEO I can be. . .  I’m an engineer, an uncle, a nature lover, a fitness nut, a son of the South, a sports fanatic, and many other things. I hope that people will respect my desire to focus on the things I’m best suited for and the work that brings me joy.”

In a way, this parallels my own journey around disability.

Obviously, my disability was never a secret.  I travel through the world in a power wheelchair, among other things.

And yet, there was a time in my life when it was critical to me that I be identified with my varsity academic team skills and my Hillel leadership, and pulled sharply away from identifying with the disability movement.  It wasn’t until directly confronted with a specific need that I was the only one able to fill that I first took on a disability related role.

Like Mr. Cook, I realized that I had to speak up.

15 years after my first public disability leadership role and having recently completed a term in one of the highest profile disability offices in the federal government, I still wrestle with this issue.  I still tend to apply to jobs were my primary value is my legal prowess or my business acumen, even if I apply it in a disability context, and I ask people to recognize that I am more wonk than activist.

Equally important, I try to make clear that, though I am a straight white person with a disability, I am extraordinarily passionate on questions of justice and equality for people of color and the LGBTQ community.

Very few people are one-dimensional, and I think it is very natural to want to be identified by your talents rather than your minority status.  And yet, says Mr. Cook, that desire for privacy, which reads like a desire not to be labeled was holding him back from making a difference.  He says,

“I realize how much I’ve benefited from the sacrifice of others. So if hearing that the CEO of Apple is gay can help someone struggling to come to terms with who he or she is, or bring comfort to anyone who feels alone, or inspire people to insist on their equality, then it’s worth the trade-off with my own privacy.”

Even as it was important for Mr. Cook to continue to be identified with the incredible talents that he brings to Apple, he recognized that, by the very fact that he was the CEO of Apple, he had a certain role to play in the quest for equality, if he embraced it.  I like to think that my own embrace of disability as a cause was motivated by something similar.

Unlike Mr. Cook, I am now an intentional activist, but, even when I’m wearing my corporate lawyer hat, I tried to live in a way that publicly embraces that I’m a corporate lawyer with a disability.  I speak to bar associations and groups of children.  I serve on diversity committees, and try to help my legal employers when they seek the disability perspective.  I embrace both roles because I know that to do so is a way to make a difference.

And I do believe that it needs to be an intentional choice.  We have become a polite society.  For better or worse, despite my very visible disability, very few people are going to approach men disability issues unless I open the door.  I think that’s a good thing, I think it should be a choice.

It should be a choice because everyone has their own circumstances to deal with, but I encourage those who can to speak up.

If you are a person with a disability who does not feel the need to hide that disability because of a high risk of discrimination, even if you don’t think of yourself as an activist, think about publicly embracing the label.  Embrace it to become an example to the searching for role models, a living example to your coworkers that people with disabilities are just like them.  Don’t drop your life and become an activist unless you really want to, but think about how you might do as Mr. Cook is done and turn the life that you are leading into your own form of activism by speaking up.

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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.

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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?

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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.

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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.

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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.

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In Solidarity: Falling off My High Horse to Embrace My Identity

I have always been suspicious of solidarity.  Solidarity always felt fake.  It always felt a little bit like privileged people assuaging guilt or boredom by taking on a shared label with their oppressed brethren.  It felt like the fallback position for those who couldn’t or wouldn’t join in opposing oppression unless they could feel themselves oppressed. In fact, whenever I was caught up in a web of solidarity, be it the ubiquitous street nod to a fellow wheelchair user or a passing Jewish greeting to a complete stranger on the Upper West Side, I always felt like a bit of an impostor.

I could nod, but as a privileged Ivy League lawyer, did I really understand the realities faced by most people with disabilities?

I know the proper call and response for every occasion in the Jewish year, and I wear a yarmulke, but.  As a public school kid growing up in a reform family, I never felt the mismatch with secular society that some who grew up observant struggle with.  Growing up in New England, even the anti-Semitism reported by my friends in other parts of the country was foreign to me, living, as I did,  in a region which has adopted a lot of Jewish culture as its own.

I could be, and was, sympathetic to the struggles.  I even wrote blog posts expressing gratitude for my luck at not struggling as they did, and I have worked as an advocate, especially in disability circles.  But, in my heart, it was often their struggle.  However guilty it might make me feel, I felt no right to claim that I was fighting for me.  This made the solidarity feel fake.

In recent months I have begun to realize that this was a comfortable arrogance.  More than anything, it was a delusion about my own situation.

Just this week, a Jewish couple was attacked on the Upper East Side of New York.  Over the last few years, I walked through that neighborhood many times a week with not a care in the world.

Further, as I find myself partially employed these many months, and receiving services from Medicaid for the first time since passing the bar almost 10 years ago, I find myself falling into the half remembered shuffle of a welfare beneficiary, my life subject to the arcane and irrational requirements of the government programs on which I depend for my medical care and my personal care.  Today, I misread a letter that appeared to indicate a significant reduction in my personal care services, and I experienced a gut twisting surge of nauseated panic as I frantically tried to resolve the truth while living nightmare scenarios of how I would deal with the reduced care, since my current system is barely sufficient to meet my needs.  Thank God I had just misread the letter.

And so I come face to face with a bitter reality.  As long as I live in a world where people with disabilities either often cannot live independently at all, or at best can do so under programs with complicated and limiting rules, I am not guaranteed to live independently.  As long as I live in a world where people are attacked simply for being Jews, I am at risk, whether I live in Boston, New York, or Vienna.  The struggle of my brethren is my struggle not because of empathy, or even shared identity, but because as long as they are at risk, I am at risk.

I had been living high and mighty for a while, a New York Jew with a fancy lawyer job, paying for all my own personal care.  I may get there again.  But until all of my brethren have reached the security that I enjoy, I am not safe.

This, then, is what I have learned.  I must fight for the rights of all like me.  Further, it is imperative on me not because it is right, though surely it is, nor because I feel for others, though surely I do, but because we are all in it together.  Next time I get the nod, I will return it with full acceptance of our shared destiny, our shared struggle.  We will join together, in solidarity.

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Finding Our Own Path Through the Darkness: A Reflection on the Death of Robin Williams

I didn’t know Robin Williams.  Further, in an overabundance of honesty, I will say that he wasn’t particularly my favorite anything.  I like some of his roles, I disliked others, and the two main television roles that I observed, Mork and Mindy, and The Crazy Ones both irritated me.  When I read on social media of the people lamenting the loss of his talent, I am left largely unmoved.  Plenty of people cease their professional creative lives by their 60s.  We would not be lamenting the loss of Mr. Williams talent if he had chosen to retire from public life at 60 to take up birdwatching.  I don’t even know if we would be lamenting it in quite the same way if he’d had a heart attack, or been hit by a truck.

Rather, I think the unique pain that I, and perhaps many others, feel at his death is the idea that this symbol of joy, beacon of good humor and, by all accounts, all around good guy, who read for dying children and snuck in the hospital rooms to see injured friends, was himself in so much pain that he took his own life.  A piece in Slate magazine yesterday closed by noting “Mostly I wish that his lifetime of sharing himself with us had somehow nourished him as much as it fed us all.”

A Facebook friend with whom I am not close commented that she only wished that Mr. Williams had understood how valued he was by his fans.  Frankly, I’m sure Mr. Williams did know.  By all accounts a smart man, he had won numerous awards for his talent, and sold millions of copies of his movies.  The point is that this recognition, perhaps even adulation, did not provide him the nourishment that he needed.

As someone who struggles with depression, and someone who has more than my fair share of promoters, supporters, and partisans, I empathize.  I have read descriptions of my life that have left me overwhelmed and sheepish in equal measure.  I have received such kind words that, verbose as I am, I have been bereft of speech.  I have known people to fly around the world to celebrate with me, and have once or twice been hugged by complete strangers with the simple explanation that they had heard much about me and simply had to express their affection.

And yet, as a depressive, I am often alone in my pain.  For me, the best that I can describe it is a wall or a distance that all of the love and affection in the world feels unable to breach.  I won’t pretend to know how it felt for Mr. Williams, because I think we each experience this in our own way.  (Lest anyone be worried, I am not suicidal.  As psychologists have observed, I am “lucky” enough that on my worst days, the paralyzing fear of death created by my other mental illness diagnosis, anxiety, completely overwhelms any inclination toward self-harm) I have my truth, he had his, and ultimately his led to a decision that most of us cannot fathom, and that those of us can wish we could not.

Why do I write this?  Well, if I succeed in nothing more than addressing the apparent misconception that a person suffering depression must be unaware of the value that they represent others, then I suppose that that is a public service.  More importantly, though, I seek to dimensionalize and deepen the way people look at this issue.

There is a vast toolbox in the fight against depression.  From therapy and psychopharmacology to faith, lifestyle alteration and the love and support of families friends and communities, the best combination for each person must differ, even as each person’s depression differs.  For me, social interaction, comfort, purpose and lack of stress are key factors.  For someone else, adulation and a recognition of value might be critical pieces in the ongoing fight.  Only trial and error on the part of the person with depression and attentive receptivity to preferences on the part of those wishing to help can determine which tools will be of best use in each person’s individual battles.  All we can take from the tragedy of Mr. Williams passing is that he was unable to find a combination that worked for him, and that is a tragedy.

It may be empirically possible, as the Slate article does, to observe that sharing of himself was not sufficient to leave Mr. Williams feeling fulfilled, though even then I hesitate to make any judgments about the relative value of a particular experience simply because he ultimately lost his fight.  It is surely not possible to presume that he was unaware of his value to the many who valued him greatly.  We know only that this awareness was insufficient, in his case, to give him the strength to continue the fight.

So, don’t take from my words a particular prescription.  Rather take from my words the knowledge that this is a grueling battle and the path to victory is long and uncertain.  If, as me, you suffer from depression, the best I can advise is to try to avoid giving in to a feeling of failure or hopelessness when a particular treatment or strategy does not resolve your pain.  (Far easier said than done, I know.)  The strategy that works for you may be around the corner.

If you wish to help someone who is suffering, start by jettisoning the conviction that you know what it is that they need.  The same hug that is a lifeline for one suffering person is a nonevent for another, and an unwelcome invasion of space for a third.  Rather, be willing to give whatever it is they do need as it reveals itself.  I have no magical prescriptions.  I am far from victorious in my own fight many days.  All I can offer in the wake of this tragedy is my point of view, and maybe a little bit of perspective.

Mr. Williams, the stories that are coming out about your life are truly amazing and your memory will be for a blessing.  Your pain has ended now, and, maybe, just maybe, as such a wide icon with such a successful life that nonetheless ended tragically, you will be the catalyst that starts the discussion that helps a few others find a path through their pain that leads to life.  May it be God’s will.

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Caring for Those Who Care for Us: Paid Sick Leave for Personal Care Attendants

My personal care attendants are, for the most part, men and women of extraordinary dedication.  I expect that dedication, I am grateful for it, and I need it, because the work that they do is critical for my life.  As such, I often ask them not to call in unnecessarily.  Finding coverage, especially on short notice, is difficult, and going uncovered isn’t an option, unless I want to end up dead or seriously ill.  As I explain to them, this is not the type of job to which to call in just because you are having a bad day, or feeling a little off. That said, I also make it very clear that I don’t want them to work if they are truly sick.  It’s not good for me, in that I might get sick.  It’s not good for me, in that they might get more seriously sick, and become unable to help in the future.  Mostly, it’s not good for me because I find the idea of forcing a sick person to work to be inhumane, and to make a mockery of the very dedication that they show me by working.  And yet, every time it happens, we are faced with a horrible dilemma.

The lack of paid sick leave in this country is as horrible as it is nearly universal.  A brief overview of attitudes and issues can be found in this July 28 article by Washington Post columnist Catherine Rampell, celebrating a new New York City law to the contrary.  Describing the economic incentives behind the issue, Rampell says colorfully:

As you can imagine, most employees who arrive at work after puking their guts out don’t do so cheerily. They knowingly put others’ health at risk for two key reasons. One is that they can’t afford to miss a shift. The other is that they fear getting fired for the great sin of missing work because of illness. And in most of the country, businesses can fire workers for missing work, regardless of the reason.

Now, let’s stipulate that I would not fire my employees for calling in sick.  That said, I am provided a fixed number of hours by the Commonwealth of Massachusetts with which to pay personal care attendants.  Even assuming that the program allowed me to use those hours for sick time (it almost certainly does not), I would need to use those hours to hire a substitute for the sick attendant. Thus, I and my employee are stuck.  One or both of us will suffer.  Either they will come in sick, and we will both suffer, or I will mandate that they stay home, and they take a financial hit.

The New York law, which appears to be limited to employers of five employees or more, will not address this issue.  By creating a carveout broad enough for personal care, the Legislature relieves state payors of the obligation to pay this important benefit.  Thus, my New York counterparts remain powerless to provide it.  It is yet another case where people with disabilities need to oppose that which is best for them and their workers because the alternative is to do without necessary services.  A similar situation arises with regard to mandatory overtime, as I discuss in an earlier post.

In Massachusetts, we have the power to change this.  On Election Day 2014, ballot question number four will be put before the voters. I leave the full text of the question for you to peruse, but the most important feature is that the bill specifically addresses personal care.  Recognizing the importance of this category of employee, the ballot question solves this in the best way that I’ve ever seen.

It makes sick time available to all employees, though, presumably to protect small businesses, only requires paid sick time for businesses of 11 employees or more.  Then, the master stroke.

For almost all purposes, PCAs are considered employees of the consumer, and this is very important.  For this initiative, every PCA under a State program is considered an employee of a particular state department.  Not only does this meet the 11 employee threshold, but it makes it very clear that it is the State’s responsibility to provide compensation for that time.  If this measure passes, every PCA in Massachusetts will be entitled paid sick time accrued at the appropriate rate and every consumer will be certain that that pay does not reduce the number of hours that they are allowed.

If you live in Massachusetts, I encourage you to vote for this.  If you do not live in Massachusetts, but you care about justice for this important population of workers, use the link proposal as a template in advocate for it in your state.  Let us do a little more for these workers that do so much for us.

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Mourning a Mentsch: The PCA Who Became My Friend

On July 29, 2014, I lost a friend.  Stefan Schack, (who would probably be protective of his age even in death) died in his early 40s.  Almost all deaths hurt those of us left behind, and tragic deaths, far too young, hurt more.  But, in the clarifying pain of that loss, and as I begin the slow transition of celebrating his life, rather than morning his death, I am forced to reflect upon the nature of our friendship, special, unique, and to my reading audience, informative. See, Stefan and I did not start out as friends.  We met the day that he interviewed to become my Personal Care Attendant.  I was taken immediately with the eloquence, energy, and gregariousness that he brought to his interview, and he was immediately my first choice for the job.  So I was disappointed when he called me a few days later and said that, upon reflection, he couldn’t take the job, because it might interfere with his day job.

Shortly thereafter, I had a weekend position open up, and before I posted it, I thought I would call the interesting fellow who had turned down the weekday shift.  Stefan accepted.

Now, Stefan was my kind of people.  I could tell immediately that we had compatible sensibilities, world views and senses of humor.  For me, I usually see this as a stern red flag.  It is important, I often tell people, to remember that your PCAs are first and foremost your employees, and you need to make sure to maintain a certain degree of detachment.  You may have to fire this person.  You may have to give them pointed feedback if they are not performing their job appropriately.  They may quit, and, trust me, when someone quits, you remember that they were not your friend.

So, I laughed with Stefan from day one.  We joked, and we turned the work of taking care of me into his much fun as possible.  (I would give nearly anything to have one photo of Stefan, wearing  one of my hand towels as a “do rag”, which he wore to keep the sweat out of his face when he was showering me.  He was particularly partial to one that I had in bright yellow and one that I had in lavender.  He said they were his colors for his gangs “the Sunnyside up’s” and “the lavender lug nuts.”)  Our mornings were pretty cool, but part of Stefan’s gift was that he never forgot that he was there to help me, to meet my needs.

Stefan began working with me as certain parts of my health were in sharp decline.  The task of caring for me was not only becoming more difficult, it was changing from week to week as doctors would offer new strategies to address mystery issues.  Unlike his weekday counterpart, Stefan did not have a healthcare background.  His primary job was in technical training at a law firm.  But, as we learned together to embrace foreign medical concepts like laxatives and enemas, the sorts of things that both of us found a little bit icky, he embraced the duties of my care with a compassion that was unmatched.  I honestly think that he was among those most dedicated to finding some way to recapture my quality of life that was slipping away.

And that was the primary nature of much of our relationship.  Almost all of our interactions were paid, and frankly, it would not have occurred to me task for free help from someone who had come to me in part to improve his economic situation.  Yet, in the course of that paid work, his compassion and enthusiasm from my care was incredible.

As was his concern for my well-being.  Stefan would drop almost anything to come to me if I was in need.  Those of us that rely on personal care live on a bit of a teeter totter.  When our care is good, we can achieve the same heights as anybody else.  But that success balances on the whims of the individuals that we rely on to keep us functioning.  Part of mitigating that is hiring good people, but another part of it, given that there will always be people that let you down and unforeseen circumstances, is to have a few people that you know you can count on when everything else goes to hell.  From 2011 through 2014, Stefan served in that role for me, competently managing to protect enough of his time to see to his own needs while never leaving me to feel that mine might go unmet.

Somehow, over the course of this unflagging dedication, we became friends.  Some of this is because of the endless hours spent laughing, joking, and dreaming of the future while we were doing the work of my care.  Some of it is because of the mutual emotional support that we provided each other through life changes, especially as he helped me come to terms with the end of my engagement.  Some of it is because we were just two compatible people.  But a big part was, how could you not come to feel close to someone that takes such good care of you?

At the end of the day, my care was at the center of our friendship.  Stefan was a self-proclaimed foodie, but we rarely ate together.  Stefan was a wine aficionado, but I believe we never once drank together.  I don’t think I ever met one of his friends, and he only met mine if they were coming to stay in my house while he was at work.  It’s true that, in those precious moments of care, we shared many a hope and dream, but always within that structure.

And so it is fitting that my last face-to-face interaction with Stefan was as he helped me to pack my apartment, and saw me off to my new life in Boston.  It is also fitting that the first time that he ever did anything for me for free was when he cleaned up my apartment after my departure and returned my Verizon equipment.  See, our relationship was transitioning, and it was no longer important to maintain that structure.

I was leaving New York.  Stefan wasn’t going to be my caregiver anymore, and I think we were both looking forward to building a new more social kind of friendship as that role was left behind.  We were talking about a visit, this summer, and reading the various remembrances that others have of Stefan, I bitterly resent that we have missed the opportunity to build that new, next kind of friendship, around bars, parties, and urban landscapes.

And yet, I am grateful to Stefan.  Not only for the friendship and peace of mind that he provided over those years, but for demonstrating to me just how it is that one can maintain an effective friendship inside of a truly professional care relationship.

I have had a few other caregivers become friends.  Usually it was because the actual professional part of our relationship didn’t last very long.  Or because of truly unique roles.  In one case it was someone that I quickly came to view as a brother, (his kids now call me Uncle Matan) in another someone to whom I still refer as a second mother.  What Stefan showed me is a model for a friendship that works inside of the care relationship, by never losing sight of three things: first, the primary purpose of the interactions remains my care; second, I am requesting labor of this friend and should be prepared to compensate them just as we all expect to be compensated for our professions; and third, that, friendship aside, Stefan understood the importance of drawing boundaries, of understanding that our friendship did not mean that he could compromise himself for my care any more than one would compromise oneself for any other job.

These are the three traps into which consumer/PCA friendships can fall, which will usually destroy both relationships, professional and friendly.  Often, a PCA who becomes a friend can forget that there is a job to do and that their “friend” is still an employer with expectations that their needs will be met.  This can often lead to explosive partings.  The other two risks are paired, that the line between favors and shifts might blur, and ultimately become exploitive of the PCA friend, or that the PCA friend will become so committed to helping the consumer friend that they neglect their own needs.  Either one will destroy a friendship in short order.

Somehow, Stefan managed to navigate all three and become a true friend.  It created a strong basis that we thought would carry us for years to come.  I can only attribute this magnificent balance to the superb human being that he was.

And so, my friend Stefan, for whom I am grieving, not only made my life immeasurably better by the care and friendship that he provided.  He showed me a model, however rare, of the way for true friendship to grow.

In a week that has seen much PCA drama for me, I don’t know whether that balance was a once-in-a-lifetime thing.  I hope not.  I know that if I find it again, I will see and hear echoes of Stefan, the PCA who became my friend.

May his memory be for a blessing.

The family has requested that in lieu of flowers, a donation be made to either the American Heart Association or to Housing Works (NYC) in Stefan's honor.

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