Saturday, August 20, 2016

My Not So Ridiculous Reason For Voting For Hillary Clinton

During the DNC, Sarah Silverman told the Bernie or Bust folks, "you're being ridiculous."   That is not how one wins people over, assuming they can be won over to begin with.

That remark, coupled  with remarks made by the sorest winners I've ever encountered, have caused me to think, "Oh the hell with it.  Let them vote for Hillary Clinton."  I was thinking that, for the first time in my adult life I would not vote for president.  Only down ticket.  I rationalized further that since I live in Illinois that it doesn't matter whether or not I vote for Hillary Clinton.

After hearing Khizr Khan's speech I started to rethink my attitude. But what really caused me to shift was this article sent to me by my eldest brother about the fate of Lithuanian Jews during World War II.  

I started to think about why my grandparents came here. They came here because they had witnessed pogroms.  They came here, as did all immigrants, in hopes of a better life for their children and their children's children.

My Grandma S, my mother's mother, never forgave herself for leaving her father behind because he ended up starving to death.  She really had no choice.  During World War I, she had to hide from hungry German soldiers who went from house to house looking for food.  And so she left on an arduous journey that would take her from her beloved Vilna to Amsterdam where she boarded a ship that took her to a port in Canada. From there she wended her way to East Texas where Tante, as she was known, had settled with her family.

My Grandpa S, my mother's father, joined his brothers in Chicago.  Their sister went down to Texas and that is where she met my Grandma S's older brother.  My grandpa went down for the wedding, and that is how he met my grandma.

For many years I thought that my great aunt, Anna, was my grandpa's only sister. Then, in 2001, after my uncle (my mother's brother) and my aunt returned from Lithuania and Belarus, I found out that my grandpa had had another  sister, my great aunt Rachel who had stayed behind.  After they visited my grandpa S's shtetl, which is now part of Belarus, they took a trip to Ponar, the mass murder and burial site mentioned in the Newsweek article.  They said Kaddish for my great aunt Rachel and her family. This is the grave site.

That is when it began to sink in as to why I should vote for Hillary Clinton.  And, because his own father came here to escape certain death, perhaps is part of the reason why Bernie Sanders has been urging us diehard supporters to do so.

From the Wikipedia page about Bernie Sanders:

Sanders became interested in politics at an early age: "A guy named Adolf Hitler won an election in 1932. He won an election, and 50 million people died as a result of that election in World War II, including 6 million Jews. So what I learned as a little kid is that politics is, in fact, very important."[25][26][27][nb 1]

Back in February when I traveled from my neighborhood on Chicago's northwest side to a Bernie Sanders rally at Chicago State University, a friend of mine, who is of Hispanic origin and no stranger to the streets, expressed concern for my safety.  When I took the Red Line on the way home, I started out in a predominantly black neighborhood.  I wasn't the least bit concerned about traveling on an el train very late at night because I was surrounded by Bernie supporters.  It was only when three young white men boarded at 35th Street (Bridgeport), that I had to keep from jumping out of my seat.  All I could think of was that they were of Lithuanian descent and, if they knew I was Jewish, they'd want to harm me.  It may seem silly, but when I am surrounded by men of Eastern European descent, I get scared.

I think about my great aunt, Rita, who, as a young dentist, was conscripted  by the German army during WWI  to take care of their soldiers. I think about how she and her husband hid out in the Parisian countryside during World War II. I think about the bureaucrat who told my great uncle not to sign up for rations, and probably saved their lives. All the Jews who signed up were rounded up.  I think about the letter my grandma received, written in several different languages, talking about how she and Sasha came out of hiding after the war.  I think about how all I have to remember her by is a grave in New Jersey, because, after surviving that horror, she died in a hotel fire in New York.

I think about how my father's mother left behind sisters back in the Ukraine.  I wonder how many of them either perished in the concentration camps or were murdered and buried in mass graves just like my great aunt Rachel.

I think about our Kid Q, who has studied about the Holocaust.  I have told her a bit about my family history.  She knows that we have lost people.  During the Republican convention, she asked my husband and me if we would have to move if Trump becomes president.  My husband said no, but I am not so sure.

When I think about all of the hate rhetoric directed at Muslims, I am reminded of that quote:

First they came for the Socialists, and I did not speak out—

Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—

Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—

Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

I read a remark on a Facebook page about how four years of Trump won't be so bad.  For folks like that, I invite them to read about Martin Niemöller to whom the above poem is attributed.  By his own admission to Leo Stein, he originally supported the Nazi party and welcomed Hitler:

I find myself wondering about that too. I wonder about it as much as I regret it. Still, it is true that Hitler betrayed me. I had an audience with him, as a representative of the Protestant Church, shortly before he became Chancellor, in 1932. Hitler promised me on his word of honor, to protect the Church, and not to issue any anti-Church laws. He also agreed not to allow pogroms against the Jews, assuring me as follows: "There will be restrictions against the Jews, but there will be no ghettos, no pogroms, in Germany."

I really believed, given the widespread anti-Semitism in Germany, at that time—that Jews should avoid aspiring to Government positions or seats in the Reichstag. There were many Jews, especially among the Zionists, who took a similar stand. Hitler's assurance satisfied me at the time. On the other hand, I hated the growing atheistic movement, which was fostered and promoted by the Social Democrats and the Communists. Their hostility toward the Church made me pin my hopes on Hitler for a while.

I am paying for that mistake now; and not me alone, but thousands of other persons like me.

My ancestors did not endure conditions in steerage just to see the United States of America become like Eastern Europe had been and continues to be.  Perhaps I am being overly cautious, but people who claim that what happened in Germany cannot possibly happen here are in denial about human nature.  When a presidential candidate talks about "Second Amendment people," it is time to think about ensuring that that person doesn't get elected.  For people who claim, from a progressively purist standpoint, that Hillary Clinton isn't good enough, let me remind you that "perfect is the enemy of the good."  Sometimes we need to settle for good enough.  Now is one of those times.

Your vote is your voice. Now more than ever.  If the Bernie or Bust folks view me as a sell out, so be it.  I am a romantic and idealist at heart, but I have a layer of pragmatism over that.  Survival trumps idealism.  I will vote for Hillary Clinton because my ancestors left an oppressive situation in Eastern Europe.  Those who chose to stay, like my great aunt, Rachel, have only a grave marker to remind people of their existence.  I want to leave more of a mark than that.  Not only do I owe it to my ancestors, but I owe it to my daughters to set certain feelings aside and do the right thing. And that is casting my vote for Hillary Clinton for President of the United States.

Sunday, June 19, 2016

Words Are Not To Be Played With: An Appeal To The City of Galt, California

There's this town in Northern California called Galt.  They have a Facebook page and a Twitter account.  According to their Wikipedia page, "The population was 23,647 at the 2010 census, up from 19,472 at the 2000 census." Still a small town by most standards.

How did this town come across my radar?  Someone on Twitter retweeted this article by the National Down Syndrome Society about Special Ed's Brewery in Galt, California, owned by Ed and Cheryl Mason.

The article concludes with a request that we contact Mark Crews, Galt's mayor. Listed his email address, his phone number, his fax number, Galt's Facebook page and Twitter account.

I am as much into word play as the next gal, but I draw the line at word play that could be hurtful.  I figured, as was confirmed by this article in The Sacramento Bee that the owners of this restaurant, Ed and Cheryl Mason, merely meant that as a play on words.

As Cheryl states, " “People are complaining about the name. The name is Special Ed’s Brewery, not Special Ed Brewery. My husband has been known as Ed or Eddie all his life, and he’s special to me,” she added.

She mentions they had no intention of making fun of special needs people.  I would take that statement at face value, except for one thing.  Their advertising slogans are anything but innocent.  As quoted in the National Down Syndrome Society article, one slogan is, "ride the short bus to special beer."  That is bad enough, but the second slogan, mentioned in The Sacramento Bee article is really beyond the pale.  "'tard tested, 'tard approved."

These slogans make Cheryl Mason's claims really disingenuous.  I have no doubt that she think her husband, Ed, is special.  But this couple crossed the line to objectionable language that is hurtful and filled with prejudice against the special needs people they claim not to be insulting. At the very least these folks are simply being ignorant.  At the worst they are being malicious.

Perhaps, as a writer, I am more aware of words and their meanings than the average person.   There's an old saying, "Sticks and stones can break my bones, but names can never hurt me."  Words do hurt.  They can go straight to the heart as sure as any bullet.

Our daughters Kid O and Kid Q both have special needs.  Kid O is  severely disabled and cannot speak.  Kid Q is ablebodied, but she is learning disabled.  As their mother, I am aware of what an uphill battle they both face in terms of being accepted by a society that values conformity over anything else.  I know that because I knew as a kid that I didn't fit in.  As hard as I tried, the more I was aware that I was an outsider. I gave up trying because being a nonconformist was better than being depressed trying to be a conformist.

I have always wanted to fit in.  I felt for years as if everyone was joining hands in one big circle and I was running around the outside looking for someone to let me join in.  It has made for a very lonely and painful existence.

Our daughters and their Special Ed classmates have challenges ahead of them. Kid O, who is now twenty, can be very primal.  Sometimes she screams at the top of her lungs.  I know that some people have assumed that we are either neglecting her or harming her.  We know that we are taking care of her the best we know how.  It would help if either she could speak or we were telepathic.  She does her best to communicate, and we do our best to understand.

Kid Q just graduated from 8th grade. Sometimes she panics and sometimes she even wanders off.  Early last September she had a bout of insomnia that caused her to wander off in the middle of the night. Thankfully I am a light sleeper and heard her slam the front door  as she left the house.  I woke up my sound sleeper husband and we, with the help of a few friends, went searching for her.  My husband and good friend brought her back about a half an hour later.  Except for the fact that she was barefoot, she was otherwise safe and sound.  We never did find her gym shoes.

I do my best to reassure Kid Q.  I do my best to be with and take care of Kid O without expressing frustration or resentment.  One thing they both know is that I love and accept them.  My husband and I are one of the few people who will love them unequivocally.

Aside from love, an individual needs and deserves respect.  We all deserve to be treated with dignity.  I know that I have been scrutinized by neighbors and strangers ever since Kid O was a baby.  People stare at us all the time. Someone, probably a kid responding to a dare, wrote "Mental" on our masonry.
One kid once made some noise at us while I was rolling Kid O to her bus.

When we casually toss around words like "retard" or "'tard" or "moron" or "idiot," we usually mean to express contempt.  It's a way, similar to the use of racial or religious slurs, of denying someone's  humanness. We can only express contempt towards people who we don't know.  Many people do not know people with mental or physical disabilities.  Or, if we do, the disabilities are perhaps more mild and that makes it easier for us to accept.  It makes it easy to use these words because there's no one who comes to mind.

As AM Baggs said, "Only when the many shapes of personhood are recognized will justice and human rights be possible." I wrote to expand upon that idea.

There are people behind these words. Although Shylock was talking about being a Jew when he said this:  " If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die," it can be applied to all people who seem to be different from ourselves.

Mentally and physically disabled people are no different from the rest of the population.  They have needs. They have desires. They love and are loved. They laugh. They cry.  When they are pricked, they bleed.  When they are called names they die.  Not literally but words do affect the heart and the spirit.  It's a death by inches.

According to Cheryl Mason, we are all being "ridiculous" in our reactions on behalf of people we love and care about.  That doesn't seem apologetic to me.  My impression is that she resents being called out on her prejudices.  No one wants the Masons to close down their business.  We simply want her and her husband to have some compassion towards mentally and physically disabled individuals.

It's not my intention to hurt the Masons. I simply want them to be aware that words are not to be played with. If they are willing to make a move in that direction then my little petition  will go away.  

Monday, May 2, 2016

Landscaper! There's a Weed in My Sod: Why We Need Inclusion in Classrooms and Community

Note:  I wrote this several years ago and had originally posted it at my now defunct Educollab blog.  Special acknowledgement to Alec Couros @courosa who shared this video which inspired this post.   I decided to republish this after seeing the Autism Speaks celebration at Kid O's high school.  Rewatching this video by AM Baggs, I continue to be struck by her strong concluding statement:  ,"Only when the many shapes of personhood are recognized will justice and human rights be possible."  This is what we all must strive for.

Waiter! There's a fly in my soup! What's a fly doing in my soup?

Looks like it's doing the backstroke.


The homeowner is explaining to the decorator and head of landscape team what colors he wants his rooms painted. Outside the team is putting down sod. As they enter each room the homeowner turns to the decorator and says, "I want this room to be painted (insert color here.) The decorator, instead of acknowledging what his client just said, shouts out the window, "Green side up!" This continues room after room after room. Finally the peeved homeowner turns to the decorator. "Have you heard anything I said? I keep telling you my color preferences, and instead of acknowledging them, you keep shouting out the window, "Green side up! Why is that?" The decorator reddens. "I am so sorry, sir. I have been taking notes. If I do not keep shouting green side up out the window, there's a chance that the (insert derogatory slur for ethnic or racial group of your choice or offensive term like "retard") will not remember to set the sod the right side up."


I have been engaged in doing my usual proto-gardening, as I call it. I have been removing dead leaves and other debris that have been covering the ground. I established two new garden spots last fall, so this is especially important. Much as I love winter, I need to do this out of anticipation of new growth. I get anxious to see, what, if any, of the bulbs I planted the previous fall are starting to come out of the ground. I call it, "coaxing out the green." It's a sacred time for me as my world shifts from darkness to light. When I see a tiny bud start to poke out of the ground, I very painstakingly uncover a bit more soil and remove any debris around the tiny plants. They are not my plants. They belong really to Mother Earth. I treat each tiny thing with a great deal of reverence. "Welcome to the world," I whisper. And, yet, when I see a blade of grass or a tiny bit of clover, I yank it. I have no qualms about yanking gill o'er the ground, as wonderful as it smells, since it would crowd out the rest in no time at all. It is, as gardeners would say, an invasive species. Not to be confused with non-native, which is a different thing altogether.

This past week, as I have been clearing out my garden spots, I have also been haunted by In My Language
written and acted and produced by A M Baggs. I forced myself to watch this three, four, five times, even as I feel myself recoil at another human being who is so very different from me. She is noisy. She moves. A lot. She offends my sensibilities which desire stillness of action and quietness of mind. Every time I watch I want to shout, "stop, stop, stop!" Her perpetual interaction with her environment just about exhausts me. And, yet, in the end, my heart centered self manages to feel empathy, something that I suspect would seem really ridiculous to her and possibly even mistaken for pity. She would probably be just as baffled by my emotional connection to my world as I am by her endless movement. In the end when A M Baggs asserts,"Only when the many shapes of personhood are recognized will justice and human rights be possible," I am thrown back on my heels. She expresses exactly what I have felt about why kids like Kid O, the child of my heart, need to be included. Both profoundly autistic people as well as severely physically disabled people are labeled as non-persons. So even if A M Baggs wouldn't get my emotions and perhaps be repelled by them, she would understand my desire for others in school and in the community at large to accept my daughter as fully human.
None of us are weeds to be disposed of. We all form an intricate part of the educational ecosystem. We all have our loud humanity that demands attention. And care. And understanding. As we slide into the charter school chasm, we need to remember how individuals make up a community. If gifted children are not exposed to kids like Kid O, then we run the risk of teaching these children that only kids like them deserve a quality education. Kids who attend charter schools may be a racially and religiously and culturally diverse group. But there are certainly no weeds. No intellectual eyesores. Poor tester that I am, it is doubtful even I would find my way to a charter school let alone my beloved Kid O.

When the first ed psychologist placed his stamp on Kid O, he essentially denied her not only a place in a classroom, but a place in the community as well. When the advocate who was helping me, in a nominal way, try to advocate for Kid O's rightful place, he told me that since she couldn't speak, perhaps their assessment was right. I knew he had a special needs son who had received assistive technology. I asked him if this was "I've got mine and the hell with you." He paused. Then he apologized. All along he had been discarding my observations and implicitly siding with people at the school. Because she couldn't speak, he was dismissing Kid O's humanity, sight unseen, perpetuating the narrow definition of who is human and who is not.

Excluding people on the basis of whether or not they had received the gift of speech was never acceptable. With technology it is now inexcusable. It is also inexcusable no to be openminded enough to be generous of heart and spirit. AM Baggs is right. When we do not take the time to learn how someone else is in the world, we do not give them human rights. Should not be easy to deny someone else's humanity. We do that when we label people instead of interacting with them. We do that when we call someone by their disability instead of by their name. Kid O is not cerebral palsy. She is Kid O. We do not do anyone a kindness when we shrug and say, "Oh, that is just them. Just who they are." When we do that, we give them an unacceptable out and us along with them. It is then that we can justify placing one child in Special Ed and one child in the gifted program. I have known kids with CP who have been kept out of gifted programs. They are kept out, not because of lack of demonstrable intellect, but because they are not ablebodied. What impact does being able to walk have on whether or not a person can read or is capable of critical thinking? None. And yet we use disability as a reason to exclude all the time. Would John Milton be rejected from the gifted program? Would Helen Keller?

When we place all the gifted kids into charter schools with the sole aim of preparing them for an Ivy League education, we do them a disservice. We are practicing a form of reverse segregation. Now I am not even remotely suggesting that kids like Kid O belong in the same classroom. But they should at least be in the same building. There is a charter school less than a block away from where Kid O attends school, and `yet those kids and Kid O may as well be worlds apart. It's unlikely their paths will ever cross.

When we segregate gifted kids from the rest of the population, we keep them from learning from people of all abilities and all walks of life. We cheat them out of a life that is richer and fuller because we give them the message, implicitly or explicitly, that "you are better than them," and so close off so many possibilities for many different encounters and interactions. We also do not prepare them adequately for certain curveballs that may be thrown their way. Would they know how to cope with life's disappointments? I am not so sure, when the pressure is for them to succeed at all costs.

When we segregate Special Ed kids from the rest of the school population, we do not allow other kids to learn from them. We also do not allow the Special Ed kids to have interactions they may not otherwise have. When we do not allow for the human element to enter into the equation, then we are left with the freak show that A M Baggs talks about. Gifted kids grow up to go to Ivy League schools and great careers and Special Ed kids grow up and end up in sheltered workshops. We are talking about extremes when we should be talking about happy mediums. We should be talking about community. Not that gifted kids shouldn't go to Ivy League schools, but that Special Ed kids should have the opportunity to interact with them and vice versa. These two populations need each other. Together they thrive. One is not better than the other. Just with different strengths and different weaknesses. They could give each other mutual nurturance. They could accept each other's humanity. Love, compassion and acceptance flow both ways.

All kids need community. We all need to feel a sense of belongingness. When we emphasize competition over collaboration, we perpetuate the idea that someone has got to win and someone else has got to lose. We also perpetuate the idea of us versus them. That is a false dichotomy. There is only us. And together we all need to succeed. We need to bring all of us along, regardless of race, religion, disability and how we perceive all of those things. We cannot have human rights for some and not for others. That cannot stand. By the same token, we cannot have educational opportunities for some and not for others. We cannot have life opportunities for some and not for others.

If we had community then all would learn and all would flourish. All would then learn to the best of their abilities, and none would be left out. We have one planet, one community: the community of mankind. If we were to extend what Dr. King said about not being judged by the color of one's skin but by the contents of one's character to also include regardless of disability, then we could have a really strong community where many more people could be more actively a part and not merely living on the fringes.

When gardens are all uniform, they are not as interesting. When communities are more homogeneous, they may lend comfort to those who dwell within, but there is little to recommend them from the outside. There will always be weeds. There will always be people who live on the fringes. But there are also wildflowers which can lend diversity. When we label someone without examining the whole picture, then sometimes students do not get the help they need.

Some of the best people I have known have been weeds. They do not conform to "sod" standards. We lose much in this society when we do not make the effort to know the weeds and to benefit from them. In other cultures, the witch doctor or shaman knows the benefit of weeds. They use different plants for their healing powers. In some cultures, people who are different are revered. Not shunned. A disabled person is not of any less value than a gifted student. Sometimes they are one and the same.

What is this weed doing in my sod? Giving it nuanced beauty, and much needed character.

Wednesday, April 27, 2016

Roger, That, or How I Stopped Worrying About Being Breastless

Late September 2014, when I had my breasts removed all I could see was this big ugly scar across my chest.

As women we are valued for our breasts.  Big ones. Small ones.  Regardless of a man's personal preference, women are often considered sexual beings first, and as friends, wives and daughters second. If we have something on top, we are taught to take a certain pride in that.  And if we are more on the flat side, we are given the message that we are somehow lacking in overall desirability.

Because of the residual puritanical overtones regarding breasts, they are considered sexual and not merely functional. There is an uproar when mothers attempt to breastfeed in public.  Men can go shirtless in public and women cannot.  A woman's breasts identify her as a human female in a way that no other part of  a woman's anatomy does.  If I were a man, I'd be able to go about shirtless in the summer and no one would think twice about it.  A neighbor does just that. All summer long he mows his lawn and does other things with his tremendous beer belly hanging out.  If I were to have done that pre double mastectomy, I am guessing neighbors would have yelled at me and perhaps would have called the police.  Post double mastectomy I am guessing I'd receive similar complaints.

Men think nothing about ogling breasts, but no one would want to see my chest, even in its current, nonsexual state.

There have been  times when I have looked at myself in the mirror, and have thought about what a freak show I have become.  I am reminded daily that I look different from other women. Every time I look at Kid O and Kid Q, I am reminded.  Every time I see a woman showing off cleavage I am reminded. Every time I see any woman I am reminded.   Even some women like a flat chested friend of ours who used to say to me, "I sure wish I had some of that," has more there than me.  Hell, even most men do.

One of my husband's cousins turned to me at a funeral luncheon and said, "I thought you were flat like me, " upon hearing another cousin come up to me and congratulate me on beating the cancer rap.  Highly ironic coming from a recently retired desk sergeant.  True, we only saw each other at wakes and funerals, but you'd think she would have noticed the massive breasts that were in front of her on those occasions.   I doubt a man would have forgotten.

I recall many times when I could see that a man was staring at my breasts. Bespectacled men really ought to be more aware of that because the images reflect in their lenses.  Being ogled like that is certainly one thing I don't miss.

Months ago my husband told me that, without my breasts and with my big belly hanging out, that I looked a bit like Roger, the alien who resides with the Smith family in American Dad!

One might think that remark would be grounds for divorce, but, instead, I thought about it for a moment and responded, "Roger, that."

That doesn't mean I haven't grieved the loss of my breasts.  It simply means I have finally come to a place of acceptance.  Do I still feel self conscious about my body image?  Yes.  Many women do.  It's ingrained in our culture.

Although I still have moments of anger and grief, overall I feel less and less like a freak show and more like myself.

So, Roger that.

The Old And The Breastless

Now that I've had scar revision surgery meant to smooth out what was left over from my double mastectomy, I have been wondering if I should still do something artistic. I know that some women choose to have elaborate designs tattooed on their chest. I have seen one, and it was quite stunning.   I've been told that some women simply have nipples tattooed on their chest.  That strikes me as a trifle odd. Occasionally I feel inclined to give into my dark sense of humor and have "Insert Breasts Here," written across my chest.

Unlike most other cancers where the results  are internal, there is no denying that I have had something removed.  One does not go from carrying around 44I breasts to entirely flat and not have it be traumatic. Although the proper medical term is double mastectomy, it ought to be considered a double amputation. The more sterile medical term denies the emotional impact in a way that the phrase "double amputation" does not. While I certainly would not compare losing a breast to losing a limb, the removal is just as upsetting from a physical and psychological standpoint. As I have written previously,  I had hoped some day for breast reduction.  Not breast redaction.

Granted, I could have kept my right breast as the cancer had not spread to it.  But that would have meant months walking around with a prosthetic breast on my left side while I finished up my herceptin treatments.  When the plastic surgeon told me that breast reconstruction would require eight hours of surgery, that sealed it for me.  There was no way I was going through that.

More importantly, I had spent time in the chemo chair sitting next to women who had a recurrence of breast cancer because they only had one breast or part of one breast removed.  I decided right then I was going to do whatever it takes to keep that from happening.
When I consulted with the  surgeon about scar revision surgery,  I finally asked him why I had these skin flaps under my arms.  He told me that they had the highly technical term of  "dog ears,"  and that it was actually skin from my back.  I suppose that when you are flabby that is something you end up with.  Even after scar revision surgery, I still have some of that skin under my arms.  I suspect that insurance would not pay for yet another surgery, and, even if it did, I would likely decide to just live with this oddness, because, say it with me, it still beats the alternative.

Evidently my back hasn't received the memo that I no longer have breasts.  My ribs still rotate in towards my spine.  Apparently my breasts on such a short frame needed extra accommodation.  Sometimes it feels as if someone is jabbing me with a thumb.  Or hammering a peg.  I go in for adjustments, but that only provides temporary relief.  At least I know what it is.  Does hinder one of my most favorite activities, which is taking long walks.

Sometimes my skin feels so tight that I have to remind myself to buckle up when I get in the car because it already feels as if I am wearing a shoulder strap.  I have to remind myself that chest pain I feel is entirely superficial. Literally only skin deep.

Occasionally people hug me too enthusiastically.  Since I no longer have padding, my breastbone and cartilage feel all the impact.  Perhaps someone ought to write a pamphlet about how to hug a woman who has undergone a double mastectomy.  I often find myself having to remind people that they can't squeeze me as tight as they once did, although I am grateful that they are truly happy to see me.

It is a strange feeling to be thinking please don't hurt me when someone reaches out to hug me.  I still enjoy receiving hugs, especially what I call big ol' bear hugs.  I enjoy the closeness.  I just wish folks, including my husband, would be gentler.  Kind of ruins the moment when I have to say, "Not so hard."

Keep those hugs coming.  Just remember that the woman you are embracing is one of the old and the breastless.

Saturday, January 30, 2016

Mental Illness Is Neither Black Nor White

We have been told that we are our brother's keeper.  When we lose a member of our community, we feel a sense of failure.  Or, as Ira Socol puts it, "And so we might give up, the impossibility of the task before us. We might descend into depression ourselves, overwhelmed by the hurt."

Perhaps an oldish white man whose last name was  Black being killed by a young black man whose last name was White is meant to be only a perverse cosmic pun.  The fact is that both men ended up in the same homeless shelter because they both suffered from some form of mental illness.  Because of the lack of mental health facilities in this country, this was a murder waiting to happen.  As was reported, the young man had been going around the shelter threatening to kill somebody.  Why weren't these threats taken seriously?  Or were they shrugged off as so much drama?  “We lost two,” Mr. Ricks said. “We lost a young man who needed help and an old man who didn’t need to die.”  The problem is that both men needed help with very little possibility of ever receiving it.

 As Deven's son Jonas said on his Facebook page:

Although (my father) had struggled with mental illness for many years, he was unable to get the treatment he needed, and he fell through the cracks of a severely broken system. It is hard not to hate the man who took my father away from me, but ultimately I see my father’s killer as another victim. Had there been adequate mental health infrastructure in place, this tragedy would not have happened.

Perhaps it wasn't just a lack of facilities that prevented both men from getting the help they needed.  Perhaps in Deven Black's case it was also the stigma or shame of mental illness that stopped him in his tracks.  Ira and others in his community who reached out to him should not be so hard on themselves.

The hard lesson that I have learned over the last few years is that you cannot save anyone.  C., a young man we know, is an Iraqi War vet.  Given the shaky childhood he had as well as his war related PTSD, he will not take himself to the VA for treatment.  Whether it's some form of addiction or mental illness, the fact is he suffers from some altered sense of reality.

Much like you can lead a horse to water but you can't make them drink, you can lead an individual  to the VA or to a mental health facility but you cannot make them accept treatment.  Under such circumstances all you can do is wait and watch and hope that the individual will decide they have hit bottom. Hopefully neither too hard of a bottom nor too soft and sandy of a bottom which would only cause them to sink even deeper.

In her open letter to the president about mental health, Rachel Griffin vividly describes that sinking feeling as she waited on hold to find out about insurance coverage. She continues on to talk about the overall dismissiveness of some of the psychiatrists she sees before finally finding the right one who helps her discover a path to recovery.  Rachel states, "I haven't had any relapses since receiving this excellent care (7 years strong). I am a thriving, happy, valuable member of my community."

Clearly she has enough inner strength that allowed her to continue to stumble over obstacles that many either cannot or will not.  Rachel can advocate not only for herself but for others.  She adds:

People are too ashamed to get care because of stigma. They wait far too long and then when they finally try and it's complicated and hard to access. They finally get it and it's low quality. It's rushed. This all needs to change.

Perhaps Deven Black would still be alive if he had not felt ashamed, or, despite the fact that people reached out, not scared and alone.  Or, worse, perhaps feeling as if he would be a burden. That is what a very dear friend of ours keeps telling me. I have been trying to convince him that not only would he not be a burden, (a challenge, yes, but a burden, no) but ultimately a tremendous asset to our community.

Whether it's PTSD or childhood abuse or some other trauma, we need a way for people who are suffering from mental illness to feel that they are whole.  We need to find ways to prevent tragedies from happening, be it suicide or murder or simply disappearing into the ether.  

We need to do more than just convince politicians to stop closing mental health facilities in order to balance a budget.  Even if more resources are not available, we need to give those suffering from mental illness a way to feel safe. We need to let them know that no one will blame them for being mentally ill.  Although the message of all means all as expressed by Ira Socol is a powerful one, we need to realize that there simply will be people we will lose along the way.  It will never be our choice.  It will be their choice.  

Rachel Griffin invites us to join her on Twitter using the hashtag #iamnotashamed to which I'd like to add, #youarenotalone  And, of course, #itwillgetbetter.  

I don't want either Deven Black or Anthony White to be merely symbols of mental illness.  I want both of them to be remembered as men who struggled and who didn't receive much needed help. 

We need to see to it that everyone knows they are cherished gifts. We, as a society, need to stop both categorizing and dismissing people who we find to be inconvenient.  We need to find ways to form welcoming communities.  We all need safe havens.  We need to recognize that improving access to mental health is not merely a problem for those who are mentally ill.  We are all Black, and we are all White. 

Friday, January 29, 2016

Kaddish for Deven Black

I am grieving for my friend, Deven Black.  I met Deven on Twitter back in 2009.  At that time he was a Special Ed teacher.  He came to teaching later in life than most.  We would often kibitz late at night about things that mattered to us.  We talked about our families.  We talked about how things were for us growing up.  Like me, Deven was of Slavic Jewish descent.  Like me, he cared about social justice.  We both wrote about Special Education. We both wanted to turn our small corner of the world into a better place.

A few years ago his principal urged him to train to become a school librarian and modernize the library they had at the school where he taught.  Even though he was no longer a Special Ed teacher, that still mattered to him.  He wanted those kids at that Bronx school to have a chance.

When I wrote about wanting to start a movement towards education equality, Deven told me to sign him up.  Well, I never got that off the ground, but I think he liked my idea of somehow building the educational equivalent of the underground railroad.  I wanted to create an organization and call it something like, "Follow the Drinking Gourd."  Or, at the very least, incorporate that theme into the quest for education equality.

I often felt out of my depth in discussing education.  Although I have a Master's in English and spent several years as a part-time instructor at several community colleges, I never thought of myself as an educator.  I had never taken education courses, and so I never felt qualified to speak about educational practice.  What qualified me to talk about Special Education was the fact that I have two daughters who are in Special Education classes.  I have roughly seventeen years of advocacy under my belt.  While other teachers would tell me to go play on the freeway, Deven took me seriously.  He was one of the few educators on Twitter and in "meatspace" who respected my experience, and, to him, my lack of knowledge in educational theory was irrelevant.  To him I was an equal.  

When I flew to Philadelphia to attend EduCon in late January 2011, Deven took me under his wing.  As soon as my plane landed, Deven was calling me on my cellphone.  He waited for me at the hotel we were staying at, and then whisked me off to a nearby restaurant and bar where teachers were gathering informally to grab a meal and schmooze.  Deven introduced me to people.  He saw to it that I felt at ease.  

Deven accompanied me on a tour of HMS School, a residential school for disabled children, graciously arranged for us by Dr. David Timony, another Twitter friend.  When David dropped us off at SLA, where EduCon is held every year, I didn't see that much of Deven after that.  

Deven and I continued to tweet at each other, but it seemed as if he was around less frequently.   When I was dealing with my cancer diagnosis and subsequent treatment in 2014, I don't think it occurred to me that I hadn't seen him in quite some time.  When I emailed him in 2015, he never responded.  I assumed it was because he was busy.  I am now thinking it's possible that he never saw my email, or, if he did, that he was too depressed to care.  

According to this New York Times article, Deven Black went from being a man who, in 2013, was honored by the Academy of Education Arts and Sciences for his exceptional work as a school librarian" to being reduced to being  a substitute teacher in 2014.  And then in 2015 he ended up suspended without pay because of being arrested for grand larceny.  I imagine this is what ultimately caused him to end up homeless and a murder victim.  

The article describes in detail how a mentally ill young man savagely murdered Deven Black.  And concludes with a quote from this resident, Mr. Ricks, "“We lost two,” Mr. Ricks said. “We lost a young man who needed help and an old man who didn’t need to die.”

And that is at the crux of the matter.  The young man, who, ironically, is Mr. White, has a history of mental illness, and needed help.  And, Mr. Deven Black, who lost his life, also had something go wrong.  Both men were failed by society and "the system."  It is inconceivable to me that a man, honored one year was demoted to being a substitute teacher the next.  That is not how we should treat our educational heroes.  If Deven was guilty of the charges against him, I can only imagine that he may have been driven to that through desperation.  And, if guilty, Deven should have been given a way to redeem himself.  We all deserve an opportunity for redemption. 

I do not choose to remember Deven Black as a man who perhaps engaged in some questionable behavior towards the end of his life.  Instead I choose to remember Deven Black for his dedication to his students. I choose to remember a gentle man who nurtured others. I will leave you with this interview which gives a better lasting impression of who Deven Black was and what he cared about the most.  His comment, "I like that I had to learn so much to be able to do this job—learning is really what I like to do most of all," is what made him a valuable member of my Twitter circle. 

Thank you, Deven.  May you be at peace.