Is Mainstream Bioethics Discourse a Form of Sexual Violence?

This was a letter/suggested blog post sent to the IJFAB blog in response to its recent conflict with Shelley Lyn Tremain. I think that Tremain showed courage and sound judgment when she admonished IJFAB not to publish work from bioethicists who are using their platforms to create expansive PAS regimes. It’s not appropriate for feminists or anyone else to take a neutral position on disabled people’s right to suicide prevention or sit quietly while countries use euthanasia to cut healthcare costs, so I think that Tremain did the right thing. I realize that framing bioethics discourse and PAS advocacy as sexual violence is controversial, but I think that rape is a legitimate metaphor for what mainstream bioethics and the PAS movement has done to the disabled community.

Here is the body of the reflection:

When I was growing up, people would walk up to me without warning and announce that I was “a retard.” They also not only said that they hoped that I would die, but described the ways that they would like to make that happen. Pretty much every day was a torrent of verbal and emotional abuse, right in front of teachers and other adults who decided not to intervene. The trauma from these experiences-which were intense and lasted for years-still impacts me as an adult. Sometimes it’s difficult for me to trust people in general, I am often waiting for them to do something cruel. Moreover, this expectation of mistreatment isn’t paranoia; as an adult I really have experienced oppression, bullying  and abuse because I am disabled.

Mainstream bioethics is basically this experience on steroids. The philosopher kings and queens in charge of this field have no shame-advocating for eugenics,[ms1]  saying that we should take seeing-eye dogs away from people in the name in the name of fighting world hunger[ms2] , and repeatedly telling disabled people to kill themselves[ms3] . I studied this movement between the years of 2007 and 2016, and although those studies lead to a great publication [ms4] opportunity, I really think that that research was bad for my mental health. I’ve read research postulating that sometimes historians are traumatized by historical events that they study, and I think that that’s true. [ms5] 

After I was exposed to his ideas in a college philosophy program, I studied Peter Singer’s writings intently. I studied utilitarian ethics. I studied the history of the eugenics movement, infanticide, euthanasia, and stories of caretakers who had murdered[ms6]  their disabled charges. Mart Pernick’s book The Black Stork[ms7] , which traces the American roots of the Nazi eugenics and euthanasia program, is one of the most disturbing books I’ve ever read. I read information about legislators in the 1910s trying to pass laws that would allow people to electrocute disabled babies. My K-12 education had held Helen Keller up as an example for disabled students to emulate, and Pernick’s book established that she was a quintessential example of lateral ableism. Despite being severely disabled herself, Keller strongly supported both eugenics and compulsory euthanasia-to get rid of people with cognitive and developmental impairments. . If Keller were alive today, she would be on TV, telling a news reporter that she supports PAS-and she would be functioning as a token, using her privilege to foment oppression against other people with disabilities.   All of these revelations together-the comparing disabled people to chimpanzees, the proposals to electrocute disabled babies, and learning about historical oppression of disabled people that had somehow been omitted from the K-12 history curriculum- made me feel deep revulsion. I felt sick to my stomach, like when bullies took me into the woods, hit me with a plastic baseball bat, and dumped swamp water over my head.

It makes me feel even more revulsion to learn that some advocates for physician assisted suicide get a sexual thrill from helping people kill themselves. Lonny Shavelson, who is helping lead a lawsuit attempting to bastardize the Americans with Disabilities Act, has produced materials asserting that someone’s death is the most “intimate” experience that someone can share with them-more than birth, weddings, and sex[ms8] . Similarly, physician assisted suicide practitioner Phillip Nitsksche has asserted that after helping people kill themselves in the 1990s, he experienced an urgent need for sex. [ms9] That’s really disgusting, and it speaks to the reality that for some PAS proponents, trying to pass laws that help disabled people kill themselves, or helping them die by suicide, is functioning as a kind of porn. In other words, in some contexts, PAS is an act of sexual violence.

 And, the proponents are bound and determined to pass these laws, no matter how many times the disability justice movement says “no.” That’s like rape.  Mainstream bioethicists and and PAS advocates have demanded that disability rights activists and disability studies scholars engage them in a nice, polite discussion about killing disabled people. For the mainstream bioethicists, it’s all pleasurable intellectual masturbation. Well, disabled people are not sex toys. Multiple disability studies scholars have tried to explain why the field of bioethics routinely advances abhorrent ideas, and bioethicists continue to do it anyway. Hence, he disability justice movement owes no more respect to the mainstream bioethics movement that we would to a rapist.

As far as I am concerned, all of the bioethicists who compare disabled people to animals, or fetuses, or advocate taking services away from disabled people to solve world hunger are evil. Those philosophers who work hard to create a world in which disabled people are routinely killed or told to kill themselves have earned a special place in Hell; that’s where their scholastic activism belongs. I’m not suggesting that people use violence to oppose physician assisted suicide-that would lead to all sorts of other social problems-but I think the time for restricting ourselves to polite discussion has passed. Disabled people aren’t walking, wheeling philosophical questions for bioethicists to exploit to further their illustrious academic careers. We aren’t serfs who have to agree to die so that more privileged people can have total control over their bodies all the time.  PAS proponents are not entitled to change our medical system into one in which doctors routinely offer suicide to disabled people and hence subject us to routine psychological violence-so that they can avoid suffering at the end of their lives.

And, all of this goes to the issue of IJFAB’s decision to publish Downie’s work. Tremain was absolutely right to call the journal out and hold it to account for giving a platform to someone who has made it her life mission to help disabled people kill ourselves. In deciding to give people like Downie a platform, JFAB is continuing in a disgraceful tradition of eugenic feminism[ms10] , a movement that ought to have ended with the eugenics movement in the 1930s. According to the aforementioned Pernick book, that’s what feminists at the time did-debated whether killing disabled people would further feminist goals. It’s 2022. IJFAB should know better than to facilitate that kind of discussion. 

So, I stand in solidarity with Shelley Lynn Tremain.  Impugning the decision to publish Downie’s work, and to hold IJFAB accountable for that choice, was the right thing to do. Standing up to IJFAB in that way must not have been easy for Tremain, but her decision to do that is an example of someone putting justice and fairness ahead of their career. Bioethics is a field that is premised on respectability and prestige, so much so that its privileged leading thinkers have become used to being to say and do whatever they want. They’ve come to expect obsequious paeans to their sagacity, no matter how abhorrent their proposals are. Facilitating that process-which is what is done when IJFAB publishes their work, is not ethical. Bioethicists who debate killing disabled people and participate in passing laws that result in a human rights crisis for people with disabilities are not entitled to have their Philosopher Queen intellects stroked by publication in a prestigious academic forum. They’re not entitled to have colleagues signal what fine, upstanding intellectuals they are. When JFAB publishes bioethicists like Downie, Udo Schuklenk, and other PAS advocates, the journal is normalizing discourse that tells disabled people to kill ourselves. It’s normalizing suicide, hate speech, psychological abuse and sexual violence. And that’s not ok.

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 [ms1]Can ‘eugenics’ be defended? | SpringerLink

 [ms2]Peter Singer and the Ethics of Effective Altruism – Prindle Institute
Effective Altruism and Disability Rights are Incompatible | NOS Magazine

 [ms3]Treatment-resistant major depressive disorder and assisted dying – PubMed (nih.gov)

 [ms4]Anxiety Muted: American Film Music in a Suburban Age – Kindle edition by Pelkey, Stanley C., Bushard, Anthony. Arts & Photography Kindle eBooks @ Amazon.com.

 [ms5]Can Historians Be Traumatized by History? | The New Republic

 [ms6]2022 Anti-Filicide Toolkit – Autistic Self Advocacy Network (autisticadvocacy.org)

 [ms7]The Black Stork: Eugenics and the Death of “Defective” Babies in American Medicine and Motion Pictures since 1915: 9780195135398: Medicine & Health Science Books @ Amazon.com

 [ms8]A Chosen Death: The Dying Confront Assisted Suicide: Shavelson, Lonny: 9780684801001: Amazon.com: Books

 [ms9]Damned If I Do Autobiography of Philip Nitschke (exitinternational.net)

 [ms10]Catapult | Give Disabled Feminists the Respect They Deserve | s.e.

Dear Special Education Teacher Who Complained About My Yawning

“Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.” -Desiderata

Dear Special Education Teacher:

Back in the fall of 2018, I observed your classroom for my Foundations of Special Education course. We talked to each other warmly and I carefully observed the methodology you used to interact with the disabled students in your class. At the end of the day I thanked you and you returned my thanks. Then you told me to get in touch with you if I had any questions about what I’d observed. I was impressed by how you related to the children and I imagined implementing the same strategies in my own classroom someday. I left thinking that the observation had gone well.

However, a week later, you told my program director that my behavior in your class was so “shocking” and “annoying” that you didn’t want to be in her program anymore. These “shocking” behaviors included yawning (caused by an anti-depressant), walking a few feet farther away from you in the hallway than is typical (caused by misperception of space) asking too many questions (my need for explicit instruction) and my voice being just a little too loud (caused by some executive functioning deficits.) The faculty in my department and I proceeded to have multiple meetings and discussions about the topic, right in the middle of the semester when my schoolwork was at its zenith. Moreover, I received a cryptic email about your complaints immediately following Lasik surgery. I cried for four hours, but somehow I managed to avoid rubbing my eyes. That’s a very fortunate, because having a layer sliced off of your eye with a laser is a big deal; if I had rubbed them, I might have gone blind.

In any case, perhaps this experience can serve as an opportunity for us both to reflect on what’s really important in life. Obviously you don’t know this, but my biological mother died suddenly of cancer in 2016. I was already severely depressed and the news that she was dying pushed me into a psychotic break. When I visited her for the last time, she was frequently in and out of a morphine- induced haze and I, having lost most of my capacity to think rational thoughts, could rarely speak. As I stared catatonically into space with tears running down my face, I desperately wanted her to be well so that we could go shopping and chat the way that we did when I first met her-but of course we would never do that again. Our family had planned to go on a lake trip together someday, but we would never have that experience now. It really, really sucked.

Sometimes, life is cruel.

And you’re sad that I yawned.

I’m working on fixing the behavior, I really am. It would make my life easier; who wants to spend their time at the meetings I’ve described when one could be, say, out walking or visiting homeless people? Also, I’d like to have a job, so if not yawning will make that happen, then I’m all for it. Nevertheless, if my yawning means that you don’t want to participate in one of the best Special Education programs in our nation, well, that’s your problem. Indeed, I’m wondering why you are a Special Education teacher at all? If you can’t deal with a disabled adult, then please go take a sabbatical from teaching and remediate your ignorance before you teach disabled children again. Then use your gifts to make their worlds better. The world will be better for it. Other than that, I’m not sure what I can say.

I suppose I might say that I forgive you for putting me at risk of going blind, triggering me and disrupting my semester. I also forgive you for being selfish and petty. I’m willing to give you the benefit of the doubt because disabled children need the evidence-based educational techniques that I saw you use. I’d rather have them have a skilled teacher who was kind of a jerk than have children taught by a “nice” person who was not implementing the strategies that will open doors for them in adulthood. Nevertheless, your beheavior toward disabled adults must change. Otherwise you are helping to maintain a hostile society for the children that you and I care about.

The Mentally Ill People in Your Community Probably Know That They Are Sick and Don’t Want to Be Around Firearms

Although public associations between mental illness and violence are always stigmatizing, one of the issues I often think about in respect to that problem is the presumption that people living with psychiatric symptoms lack self-awareness or a sense of responsibility toward the human rights of others. This stereotype doesn’t apply to me or to any of the people I’ve met while seeking treatment for clinical depression.

Between 2015 and 2016, the physical symptoms of depression became intolerable. All of the techniques that people use to thwart depression stopped working. I cried  on the treadmill that I was trying to use to keep my endorphins up. My body felt heavy, like there were weights attached to my limbs. My mind felt “fuzzy,” as though I was trying to think through static. I found myself struggling to get out of bed and neglecting basic self-care. Random suicidal thoughts periodically “stung” my mind like a cloud of recalcitrant horseflies. Most distressing were the intense feelings of rage I felt over insignificant daily challenges. Trying to function in that condition was like swimming through mud, and I knew I needed help.

Unfortunately, my symptoms grew steadily worse. The harder my psychiatrist and I tried to ameliorate them, the more intense they got. For the first time in my life, I began to experience symptoms of mania and psychosis. Hence, after several medications and two hospitalizations had proved ineffective, I consulted with an ECT specialist. After I described my symptoms, he posed a reasonable question: “Is there a gun in the house?” he asked. “No,” I said, shaking my head emphatically.

I support his decision to ask me that question, but part of me found the idea of me having a gun in my condition so absurd that I had to fight the urge to joke, “Sure, dude! It’s right next to the cat toys!”

Although guns can  pose a serious suicide risk for people with mental illnesses, they are generally associated with that tragedy, not hurting other people. Moreover, everyone that I met during my hospitalizations understood that we were ill and that we shouldn’t have firearms lying around. In fact, one fellow patient was a police officer who had given his service weapon to a colleague weeks before he admitted himself for treatment. The people I met in the hospital were there because we hadn’t been able to ease our symptoms with outpatient methods and we wanted to get better. We certainly understood that guns were not conducive to that goal.

Ergo the erroneous, unjust idea that mass shootings happen because of mental illness. I support gun control, but I often feel as though mental illness has supplanted the concept of evil in the public imagination. It is certainly possible for mental illness to cause involuntary urges to do terrible things; hence the danger of having access to a gun when one’s symptoms are flaring. However, it appears as if the mass shootings that have occurred in the last few years were meticulously planned. Average people with mental illnesses do not plan mass shootings, and the constant link that the public draws between the former and the latter is unjust. Although no one is either completely good or bad, the evil behind mass shootings is palpable. For me personally, hospitalization was a carefully considered choice. In contrast, it never occurred to me to deal with my problems by murdering other people.

The constant jump to blame mass shootings on mental illness is part of human tendency to seek answers to the inexplicable, but  there is no one solution to this kind of malevolence. Gun control is positive because guns have a unique capacity to kill large amounts of people quickly and efficiently. No gun = methods that are slower and more difficult to implement. Nevertheless, evil will always find other ways to express itself, and the impetus behind the latter is evil, not psychiatric disorders.

So please, keep guns away from me. I don’t want to be around them, depression or not. Moreover, I don’t need to be hospitalized in order to understand that mass shootings are wrong. Your other neighbors who are living with mental illnesses know that too.

 

Why I Don’t Care About Language Very Much

It strikes me that the social justice movement spends a lot of time talking about how one can reform language and make it more appropriate for our current cultural climate. From my perspective, this is often a waste of time, at least in certain very important contexts.

Before I explain why I think it’s a waste of time, I want to reiterate that many people who do much better work than me in terms of advocacy-the people whose work is helping to change the social policies that I’m about to contrast with semantic sensitivity, have made these issues very important, so I might very well be missing something about the importance of these discussions. My perspective is based on my experiences attempting to navigate the K-12 system and access higher education as a student with a learning disabilities; I realize that my perspective on this matter is not the only legitimate one. Nevertheless, this is how I see it:

Endrew vs. Douglas School District  has raised the standard for special education from FAPE to…something else that is still being determined. However, FAPE should never have been instituted in the first place, because a “some benefit” standard for education is no standard at all. I know that the same people who are working to eliminate the R word are also working to remediate Special Education, but that’s not true for everyone, and I worry that public discussions about the R word have become our culture’s de facto disability rights issue. In that context, repeated discussions of the R word just give mainstream society an excuse to leave things as they are, as long as we use a patina of nice language to cover them up. 

Although the two overlap, being nice is not the same thing as being just. In that respect, I really don’t care if someone uses the R word or uses the new term intellectual disability, people with that identity are in the same place. If I have to choose between someone who uses the term “mental retardation” but does the practical things that I need to succeed as a disabled citizen, and another person who uses the term “intellectual disability” does not, I’m going with the former.

As someone who grew up with a learning disorder, I know that the R word really hurts, but that’s because mainstream society allowed it to be turned into a slur. If people had not been allowed to make the term “mental retardation” into a singular epithet that signaled social denigration of people with disabilities, it could have remained its formerly neutral status. Instead, society keeps passing laws regarding how we are going to refer to disability, even as the policies that affect the futures of such people remain oppressive.  

For instance, if a person with Down Syndrome dies because they were denied an organ transplant, does it really matter if the doctors use the term retard or not? That person is still dead. Moreover, academics are still being well paid to advocate for such policies. If a person with Down Syndrome gets shot by the police, that person is as cold and invisibilized as if the police had called him a retard before they shot him. If an elderly woman at a nursing home gets held down and euthanized against her will, it doesn’t matter if the staff called her an old buzzard or a wise old woman while they were doing it, the dead woman is just as silenced. 

So, I’m not sure where those dichotomies leave us in terms of how to integrate language with changing social policy; all I know is that when I see an an editorial against the R-word in a periodical that ignores such problems, I cringe. 

Gratitude: A Tribute to my Bio-Mother

“A butterfly lights beside us like a sunbeam, and for a brief moment it’s glory and beauty belong to our world. But then it flies again, and though we wish it could have stayed, we feel grateful to have seen it.” -Author Unknown

I went through some hard things between 2015-2017, and one of them was losing my biological mother, Meg, to cancer. It was so hard: one of the thoughts I had shortly after meeting her in 2014 was, “Gosh, I wish I had made contact with her earlier, but I’m 31 and she’s only 49; it’s not like either of us are dying any time soon.” Tragically, the time that I thought we’d have together was not to be. After dealing with a persistent cough and pain in her limbs for over a year, she was diagnosed with Stage IV lung cancer and passed away only two months later. However, rather than describe the pain of that loss, I want to tell our story and express my gratitude for the time that we did have together.

In 1982, my biological mother and I began a journey that would begin with my conception, be interrupted by tragedy, and then be re-established 31 years later.

When she and my biological father chose to put me up for adoption, she was a struggling 17-year-old girl being raised under very difficult circumstances. When I met her in 2014, she tearfully told me that she never wanted to give me up, but she didn’t want me to go through the trauma of being raised in that environment. So, she and my bio father chose a set of loving adoptive parents for me.

Unfortunately, the birth was very, very difficult for both of us. According to her, she didn’t gain any weight during the pregnancy because her family didn’t have much food. I was born prematurely and almost died shortly after birth. Hospital personnel suggested that she name me, so that if I died, there would be something to put on the death certificate. She says that she held me in her arms and wept as she told me how sorry she was.

However, I did not die, and after visiting me in the intensive care unit for five weeks, she signed the papers that finalized my adoption. My parents knew that I might have been disabled by the birth trauma I’d experienced, but they didn’t care-as far as they were concerned, I was already their child. I am disabled, and the support of a stable, dedicated family has allowed me to thrive.

As the years went on, Meg never stopped loving me. The adoption agency allowed the exchange of photographs, and she kept at least two of them in her family album. I know that she gave updated contact information to the adoption agency when I was ten, because that’s how I eventually found her.

I know that I will always treasure the memories of times that we were blessed to spend together as reunited family members. For instance, during one of my visits to Meg’s home, we were sitting on the couch together and she put her arms around me. I laid my head on her chest and we just sat that way for while. This moment fulfilled her chief desire as my previously estranged mother, as during our third or fourth phone conversation she said, “I just want to hold you.” During that same visit we went to a nearby park with my biological siblings and watched the fireworks from a bridge over the Ohio river. I met my ninety-eight-year-old great-grandfather and was blessed to learn all about his work as a philanthropist, rose grower, and hospice volunteer. I had lunch with both of my bio-sisters and got to give them some “big sisterly” advice.

My second visit happened during that following Christmas. My oldest biological brother introduced me to the group Pentatonix’s rendition of the Little Drummer Boy, I helped my youngest biological brother with his homework, and we all opened our presents together beneath the tree on Christmas morning.

I wish that we had been able to have the time that we had all hoped for, but I am so grateful that God allowed us to have the beautiful experiences that we did have together. I know that if we hadn’t and I had searched for Meg later, only to find her grave, I’d probably have endured multiple episodes of thinking, “If only we could have had just one meeting, just one Christmas, just one outing together…” But, we did have those things.

Meg once told me a story of a time about a year after I was born when, as she lived through her own mother’s rapid decline from liver failure, she sat waiting at the school bus stop. Feeling lonely and scared, she looked out over the grass, and saw a butterfly flying nearby. She prayed, “Dear God, if you’re up there, please let that butterfly land next to me.” The butterfly landed on her knee. Thirty-one years later, when I wrote to her for the first time, the stationary I used had butterflies on it.

Thank you, Meg. Save a spot in Heaven for me.

In Memory of Meg Record Sciarra

April 15, 1965-August 19, 2016

 

 

 

Mental Illness, Disability and The Onion’s Sense of Entitlement

I really like reading The Onion, and sometimes they write articles about depression that really resonate with me. “Child Who Loses Balloon Begins Lifelong Battle with Depression,” “Despondex,” and “There’s Still some Nutella in the Jar, Says Clinical Depression,” capture some of the absurd circumstances that can characterize people’s experiences with the disorder: “Why did I just eat an entire jar of Nutella? What purpose does that serve? Why did losing a balloon throw me into an existential crisis?” And, “What if we got to put all the obnoxiously happy people on medication?” Reading “People with Panic Disorders Respond Poorly to Being Locked in Underwater Elevators” made me fall out of my chair. All the medication in the world won’t help if someone’s environment sucks.

However, these stories are funny because they reflect something true about the experiences of people with depression and anxiety; thus providing a platform for solidarity. Other times, the Onion’s coverage of disability is just mean, and within the context of its other articles, seems to maintain a double standard in its coverage of disabled people.

For instance, “Manic-Depressive Friend a Blast While Manic,” doesn’t strike me as mean, but it isn’t funny, either, because aside from his friends’ self-centered ignorance, it doesn’t really say anything about the manic person’s experience or what help might be available to him. “Manic Researchers Discover Cure for Depression” isn’t funny at all; it simply objectifies the experience someone with rapid-cycling Bipolar Disorder. Similarly, “Autistic Reporter: Train Thankfully Unharmed in Crash” is a pernicious representation of an autistic person who lacks empathy, particularly in the face of catastrophic suffering and loss. Would you like it if you were autistic and someone conflated your demeanor with the emotional experience of a sociopath?

The Onion has also dragged mental illness into the realm of political name-calling. “I Suffer From Severe Psychological Issues and I Need the Help of Mental Health Professionals” isn’t insightful, it’s a cheap shot that conflates disability with wrongdoing. From my perspective, the paper’s choice to regurgitate that trope suggests  a sense of entitlement on the part of the editorial board. They were good liberals, they loathed Trump, and they had the means to call him mentally unfit in a public forum, so they did. There is no way that the editors didn’t understand that they were ignoring decades of admonishments from the disability rights movement, but they choose to do it anyway, because it made them feel good.

Yet, surely the editors understood that that kind of piece is particularly repressive, because it conflates mental illness with someone’s political stance and, more importantly, immorality.

Satire is supposed to use irony in order to say something that might not otherwise be said, hopefully in the service of social progress. What new message was the Onion trying to further? That mental illness causes jingoism and demagoguery? That stereotype is *old.* Hence, the Onion’s use of mental illness to answer Trump’s behavior was laziness on its part.

As I’ve said in other posts, I consider this pattern to reflect the intersection of cultural invisibility and lack of moral introspection. Vapid exploitation of oppressive anti-disability tropes is product of a Civil Rights Movement that has chosen to propel itself via able-bodied privilege.

HB620: Yet Another Example of Bipartisan Ignorance

It is difficult for me to write about things like H. 620. Indeed, readers may observe that many of the writings on this blog address the dark, depressing topic of assisted suicide; yet, on some level, the former is more upsetting and frustrating for me than the latter. No one’s ever suggested that I personally should seek euthanasia, but I have been directly impacted by cuts to and loopholes within the standards set by the ADA. It would take too long to discuss them all in this blog post, so I’ll narrow my focus to a single incident.

In 2000, the Massachusetts legislature voted to lower MA’s 23-year-old Special Education standard from Maximum Feasible Development (which proscribed accommodations tailored specifically towards capitalizing on students’ strengths) to FAPE, which requires only that students derive “some benefit” from a public education. This meant that rather than preparing students to succeed in higher education and the workplace, MA schools could reduce education expenditures to the point of simply stopping Special Ed students from failing out of school.

Who passed this bill, might you ask? Surely it was a gaggle of selfish, right-wing, Capitalism Lemming Republicans with no love for the downtrodden? No. Just as HB620 passed because Democrats supported it, the bill that lowered Special Education standards in MA was passed almost unanimously by a Democrat-populated legislature and signed by a Moderate Republican governor. As a disabled teenager whose world was inundated with blue state protestations of diversity at the time that bill was passed, I was (and am) disgusted.

There are many parallels between MA’s switch to FAPE and the changes that H.620 would make to the Americans with Disabilities Act.  The consequences of requiring that disabled people wait four months before filing an official complaint when there are so many loopholes in the ADA would be deeply dysfunctional and undemocratic. Moreover, the ADA has been around for 28 years. How much longer would legislators like disabled people to wait?

In any case, this bill unequivocally sucks, and anybody who voted for it lacks insight into the connection between disability rights and equal citizenship.

As a Centrist, I actually don’t expect this from what society frames as “The Right;” I have more faith, and therefore higher expectations, for such legislators than those who see the Right as an unequivocal problem in America. Regardless of what the Republican Party does or does not do, the Democratic party has framed itself as the party of civil rights and the Republicans as oppressors who must be booted out of office as soon as possible. Hence, the fact that so many Leftist, self-professed civil rights defenders would join with their Republican adversaries  in signing their names to this legislation only reflects what many disabled people have sensed over the years: that the mainstream Progressive movement is actually the Ablebodied Progressive Movement. I have to wonder if such legislators harbor so much complacency toward the disability vote that they feel entitled to it, even if they hypocritically support measures that curtail disabled people’s rights.

Hopefully my gut feeling will prove correct and this latest bipartisan subversion of disability rights will fail to elicit any change in the law. In any case, it’s really time for both parties to go back to the drawing board. If you’re a legislator who thinks that H.620 is a good idea, than you are clearly unprepared to engage disability rights issues on a broader scale.

A Meal

When I worked in a preschool/kindergarten program as a paraprofessional in 2014, I really, really wanted to do a good job. I had been enjoying my work as a K-12 substitute teacher for a few months and rather than switching schools daily as I was accustomed to doing, this particular school had been employing me on a daily basis for several weeks. Hence, of course I wanted to impress my superiors with productivity and obedience.

I often switched between classrooms, so like any substitute, I experienced changes in routine. One afternoon about half an hour after lunchtime, the teacher who I was working under that day said, “Meghan, go get a meal.” Her instruction struck me as little odd. “A meal?” I asked. “Yes,” she repeated, “Go get a meal.” I felt the need for clarification. “Have you had lunch?” I pressed. “Yes, I had lunch,” she replied, raising an eyebrow, “Go get a meal.” “Ok,” I said.

I walked downstairs to the cafeteria, where the lunch ladies seemed surprised to see me there alone. “Meghan, what are you doing down here now?” one of them asked. “For some reason, Mrs. Diaz asked me to bring a meal up to her classroom,” I answered. “Why?” asked the other woman. “I don’t know,” I admitted, “But I’m sure she has a good reason.” So, they loaded a shiny red plastic tray with pot roast, mashed potatoes, an apple and a carton of milk.

As I walked back to the classroom with the tray, I tried to think of reasons for why the teacher would want a meal. Maybe she was going to do a science experiment, or she was going to teach the children about different food groups, or maybe there was a diabetic student who needed it.

When I entered the room, the teacher seemed perplexed. “Where’s a meal?” she asked. “Here,” I said, holding the tray out to her, “Here’s a meal.” The teacher gave me a funny look. “No,” she said. “Not a meal…Emil, the student from room five!”

 

Oh, well-it’s the thought that counts. 😉

H/T Amelia Bedelia

 

My Child’s Photo was Used in an Offensive Corporate Campaign

So Here's Us...

I was sitting beside my daughter’s bed in the Pediatric Oncology Clinic when I found out. She’s in her eighth month of chemotherapy, with nineteen more to go. This week has been particularly brutal. We had rushed her to the hospital last night when she spiked a fever. Again.

Every small setback takes a toll, but she doesn’t let it keep her down for long. She’s tough. Tough and sweet and feisty, and a thousand unique qualities all her own. She is the joy of our life.

She also has Down Syndrome, a fact that seems to matter more to other people than it does to us. I often write about her on my little blog. Anecdotes and opinions, stories of our busy life for a small, but encouraging group of readers. I never refer to my children by name, and rarely post pictures of them. But once was all…

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An Open Letter Compassion and Choices-RE: The Hemlock Society’s Solidarity with the Disabled

Dear Compassion and Choices:

A few weeks ago, one of your representatives told the Hartford Courant that the Catholic Church should spend less money fighting assisted suicide and give more of it to charities that help the disabled. In his April 7th interview with 1320 WATR, a Connecticut radio station, he said the same thing.

Deconstructing the ableism inherent in those statements isn’t my goal right now; my question is: would your organization be willing to give me $40,000 a year? Yes, that’s more than the Catholic Church gives to me as an individual, but the Church helps a lot of people; and what with the soup kitchens, hospice centers, shelters, childcare, and other services it provides to a populace that is struggling through a bad economy, I just wouldn’t feel right taking that money away from thousands of other individuals.

However, I understand that Barbara Coombs Lee makes approximately $205,755 a year to advocate on behalf of Compassion and Choices. That means that if she gave me $40,000 of it, she would still have a yearly salary of $165,755 year; which puts her near the top 1% of our country’s economic hierarchy. Indeed, since your organization has a budget of $23,000,000, could I have $40,000 of it?

As an organization that is clearly very concerned about the lives and welfare of the disabled, I’m sure that Compassion and Choices donates a great deal of money to organizations that fight injustice against people with disabilities, such as domestic violence, medical discrimination, institutionalization, unemployment, and working for less than a dollar an hour. However, I know that people in your organization have it in their hearts to give more.

Actually, I’m being selfish: Instead of giving the $40,000 to me, could you please give it to a homeless disabled person who can’t get access to the psychiatric, oncological, mobility, or adaptive services that he or she needs?

Thank you for considering my request.

Sincerely,

Meghan Schrader

(The Approximately 9 Million Dollars that C and C recently spent on program expenses alone; total assets = $23,532,206).

Incidentally, nice pen!