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.


Brought Within The Tribe

The following post of mine appeared on Zeh Lezeh, the blog of the Ruderman Family Foundation. The RFF does great work on Jewish inclusion, and I encourage to check out their blog and their work.

Zeh Lezeh (For One Another)

Matan KochBy: Matan Koch

I saw the beautiful grinning photo this morning of the young daughter of one of my camp counselors from the ‘90s, taken on the first day of camp.

It was typical of my social media feeds these days, replete with photos and messages of my slightly older friends sending off their children to the Jewish camp of their choice, and my peers reflecting on their children just a bit too young for camp, indulging in the dream of when they will do that first send off.

The themes of these posts, stated and unstated, are familiar; from “I can’t wait for my child to have the wonderful social and growth experience that I did” to “I can’t wait for my child to have the Jewish experience that I did” to the implied “I really hope that my child has the wonderful experience that I did and grows…

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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.

Disability, Personal Care

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.

Disability, Personal Care

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.