“It’s critical that we be unified in condemning these crimes without reservation or qualification — the regrettable storm of sympathy from the media that surrounds parents who murder their children sets the stage for copycat crimes. Those who justify this are making themselves accomplices to the next such murder.”

Credit: Kelli Stapleton on Dr. Phil, YouTube

By Elizabeth Picciuto

Edmund is my sweet, sunny six-year-old son with twinkling green eyes, a dimply smile, and an abiding love of aquariums.

But here’s the horrible truth: If I were to murder him, the justice system might only give me a relative slap on the wrist. In fact, the media would likely portray me with respect and even sympathy. Really, it was her only way out, the poor woman. Her life was so difficult.

If I murdered my other two children? I’d be treated with all the spitting vitriol and passionate hatred typically reserved for mothers who kill their children, like Casey Anthony and Susan Smith.

What makes Edmund different is the fact that he is disabled. He was born with a rare genetic disorder and as a result, has microcephaly. He is nonverbal and uses a wheelchair or commando crawls to get around. He receives all his nutrition through a feeding tube.

He is just as much one of the fiercest loves of my life, and occasional pains in the butt, as my two nondisabled kids. He deserves his joys, his accomplishments, his struggles, his relationships, his passions throughout the length of his life no more nor less than they do. And he deserves my support and love to get him there.

All of this may seem like common sense and humanity, but the fact is, disabled children are more likely to be abused and/or killed by their parents than are nondisabled children. And when parents do kill disabled children, the media almost always presents one of two narratives: the harried-but-saintly parent who couldn’t bear the terrible burden and (understandably) snapped one day, or the saintly parent who killed out of the tenderest of mercies.

These narratives are not only disturbingly dehumanizing to those with disabilities, but also actively dangerous.

It happens again and again. Another story of a disabled child murdered by a parent, by the very person he or she should have been able to trust the most. And the powers that be, the media and the justice system, too often rush to that parent’s defense and rain down blame on the child.

Take the case of 14-year-old Issy Stapleton, who was almost killed by her mother Kelli Stapleton in 2013, just after she had told Kelli, “I love you, Mommy.” Kelli was featured in a two-part Dr. Phil episode that portrayed her as a victim of Issy’s difficult behaviors (Issy is autistic). Dr. Phil McGraw, the host of the show, said outright that he was convinced Kelli didn’t deserve any prison time.

Another, slightly more nuanced article in New York magazine is unusual in that the writer, Hanna Rosin, actually spent time with Issy. Still, however, the article catalogs Issy’s difficult behaviors and ends on Kelli’s expression of remorse, as if Kelli is being way too hard on herself. Isn’t it tragic, the article seems to suggest, that Kelli can’t forgive herself?

Neither Dr. Phil nor the New York piece mention that, like so many other perpetrators of murder and attempted murder of their own disabled children, Kelli Stapleton had access to plenty of other options short of murder.

First of all, the day of the attempted murder, Issy’s family had been awarded a disability waiver by her state, which gave her access to accommodations that most families, including mine, can only fantasize about. Most notably, Issy would have a full-time aide at home. Kelli never needed to care for her alone.

Kelli also mentions to Dr. Phil that a social service worker had once brought up the possibility of foster care for Issy. Kelli waved it away, and he didn’t follow up. Why not?

And even without these additional supports . . . are we really to believe that killing her child was a reasonable option?

Ari Ne’eman is president of the Autistic Self-Advocacy Network, a disability rights organization that advocates for autistic people. He wrote me in an email:

This extensive study of homicides of people with disabilities suggests that sympathetic media portrayals of murders as mercy killings in fact do lead to copycat murders. And murders of developmentally disabled children are increasing.

Still, the damaging narratives continue.

In May 2015, according to the Chicago Tribune, Bonnie Liltz killed her 28-year-old disabled adopted daughter Courtney by poisoning her through her feeding tube. Bonnie tried to commit suicide as well, but survived.

According to the Tribune, Bonnie has severe health problems and said she was concerned about what would happen to Courtney after she died. Bonnie did not want Courtney institutionalized, since she had once been placed temporarily in an institutional setting, and she found Courtney unwashed and in a diaper that needed changing.

The prosecution asked only for probation for Bonnie. For a mother charged with manslaughter of her own child. The judge overrode that decision and gave her four years.

I have the privilege of not being currently ill, but I certainly know all too well the stone-cold fear of what will happen to Edmund after I’m gone. He’s only six; I’m sure that fear will only intensify.

I understand the fear Bonnie had. I dread the thought of Edmund in an institution; I have agonized over the prospect of neglect and abuse.

But what I mainly feel is grief and rage for Courtney’s life. Because that’s what it is: Courtney’s life — not Bonnie’s. It’s not up to a parent, ever, to presume that her healthy child would be better off dead than alive. And that is what Courtney was, healthy. Bonnie wasn’t making a medical decision for her terminally ill daughter. She decided to kill someone who had years and years of life and choices and pleasures and relationships ahead of her.

This article from The Washington Post covering the Liltz trial is a prime example of the mercy killing narrative. As writer David Perry points out in a blog post, the article in its entirety considers the situation from Bonnie’s point of view — how she must have been feeling and thinking, her justifications.

At one point, Courtney is described in a brutally dehumanizing five lines, each line on a separate paragraph as if to poetically punctuate the supposed awfulness that was Courtney’s life:

“Glasgow [Bonnie’s lawyer] said Courtney’s capabilities did not extend beyond a toddler’s.

She could not walk or talk.

She could not eat normally.

She could not use a toilet.

‘She took on somebody nobody else would take on,’ Glasgow said of [Bonnie].”

My son could be described that way now, and quite possibly as an adult. But you could also say:

“Edmund laughs whenever anyone wears a silly hat.

He loves to scramble up into his grandmother’s lap and give her wet kisses.

His favorite movie is Finding Nemo.

He worships his older brother, has a love/snatch-toys relationship with his younger.

He wants to have the same three books read to him over and over.”

There is but one line in that Washington Post article that describes anything at all positive about Courtney, about her interests, and what she might have liked to have done with her life had it been allowed to continue: “Courtney, despite her challenges, was seemingly happy — spending her time watching Bert and Ernie, or playing on the floor with her toys.” Yet even in this, phrases such as “despite her challenges” and “seemingly” undercut the message.

One other line notes Courtney squeals with happiness when seeing a friend.

The rest of the article is about Bonnie’s physical illness (which indeed seems severe and incredibly difficult to deal with), her justifications for killing her daughter, and a litany of caretaking acts performed, such as feeding, dressing, bathing, etc.

In all, the piece could not be more well-designed to elicit sympathy for Bonnie and alienation from Courtney, who seems a sheer burden, not a full human being.

There are many other cases of caregivers given too-gentle treatment by the press or justice system. Alex Spourdalakis was 14 when he was brutally stabbed to death by his mother and another caregiver. In one article, his death is explained away by saying “[t]hose who know the family say it is a tragic end to a long and desperate search for help.” However, unbelievably, the very same piece also notes that the Illinois Department of Children and Family Services confirmed that Alex’s mother had been offered more services, but she’d refused them.

The Autistic Self-Advocacy Network notes that within two weeks after an airing of a CBS news report about Alex Spourdalakis’s killing sympathetic to his mother, Kelli Stapleton attempted to kill Issy, and a mother named Marilyn Edge succeeded in killing both her daughter Faith and her autistic son Jaelen.

Gigi Jordan was fabulously wealthy and certainly not harried when she killed her eight-year-old autistic son Jude, but was convicted of manslaughter, not murder. When six-year-old London McCabe was thrown over a bridge by his mother, a headline termed her “overwhelmed.” Robert Latimer has been widely portrayed as “compassionate” and a loving father both in the Canadian press and at times within the judicial system for killing his daughter Tracy.

No. Hell, no. It is never and in no way okay to kill your child.

I urge you to reject those poisonous narratives. Reject it just as surely as you would if you read a sympathetic article about a kind, wonderful father who couldn’t deal with his non-disabled two-year-old daughter’s very frequent temper tantrums (two-year-olds really can be so difficult), who “just snapped” one day and killed her.

Of course I get that it’s difficult to raise a disabled child in an ableist world. I live it every day. Yet millions and millions of parents around the world just like me do the same — and we do not kill our children. It’s hard, but we do the best we can, and sometimes we screw up, and we love them, and it’s frustrating, and exhausting, and enlightening, and encouraging.

And there would be no graver insult to my son than not to see me as fully culpable for harming him.

We need to stop these demeaning narratives and recognize the full humanity of the victims. Not only because they are unfair to Issy Stapleton and Courtney Liltz, but because we can also prevent future tragedies from occurring.

Looking For A Comments Section? We Don’t Have One.

]]> https://theestablishment.co/coming-out-as-gay-was-easy-coming-out-as-autistic-was-hard-794a8c7bef47/ Wed, 18 May 2016 02:13:18 +0000 https://theestablishment.co/?p=8050 Read more]]>

Coming Out As Gay Was Easy — Coming Out As Autistic Was Hard

flickr/Pansiero

By Euan Burns

I was born autistic and gay. I was also born with blue eyes, brownish hair, and short stubby fingers that would obviously hinder any attempt to become President of the USA, but all those attributes are accepted automatically by the world. Disability and homosexuality, on the other hand, set me apart. And yet, for most of my life, I was proud of one and fled from the other.

I suppose it’s expected at this point to say that I have always felt different. That’s partly true. On the autistic side of life, I used to complete jigsaw puzzles upside-down, struggled to understand idioms, and didn’t have many friends. Then again, I did have some friends, and I was enthusiastic about football to a socially acceptable degree. I was unusual, but I think other people noticed it more than I did. In high school, though, my friends and I drifted apart. We had less and less in common: The other boys in school gained an overriding interest in girls, while I felt increasingly curious about boys. I remained largely apart.

I went to university because I felt that’s what I should do. The first day I moved away from home, I cried like a fountain. I was terrified of my flatmates, my lecturers, simple chores like shopping. I attended only one exam at the end of the term, and moved back home in the new year. I finally figured that my life was not entirely working out the way I thought it would. Researching online, I came across a then-obscure condition called Asperger’s Syndrome. Some of it didn’t fit, and I was not like the few famous autistic people out there, but the parts I recognized fit me completely. More, they explained my life.

But my diagnosis, at the age of 19, didn’t come as a relief. Instead, I felt like a failure. I failed at being social, I failed at my studies, I failed at life. Knowing that autism was the cause of that failure didn’t make me hate myself less — it just made me hate autism. I met once with the disability service at university, after I was allowed back in, and it refused any offers of accommodations. After that, I decided I would never mention my autism, never even think about it. It was merely a problem to be overcome. Even relatively accurate depictions of autism emphasized the otherness and tragedy of its “sufferers.” No-one wants to think of themselves that way. Besides, perhaps I wasn’t autistic after all? Maybe it was just a delusion, an excuse? I resolved to forget about it, move forward, and repair my life.

As part of my determination to fix or ignore my autism, I committed to dealing with the whole never-been-kissed issue. Autism is sometimes described as a developmental delay, and while that’s an oversimplification of our life experience, it can accurately describe our experience of sexuality. It’s not uncommon for love and sex to be entirely absent from our minds until (comparatively) later in life, and this was certainly true to me. Even if any crushes had thrown themselves at me, I was more likely to build a particle accelerator than attempt a relationship. By the age of 22, though, it was clear that the only way I was going to have love in my life was by living as a gay man.

I may have had trouble coming out — even to myself — as disabled, but I didn’t have trouble coming out as gay. I had the fortune to grow up in a lovingly supportive family. My cousin came out years ago, and his partner is accepted entirely by the family. My best friend was just confused that I hadn’t told him sooner. My mother was pleased for me; when I told her I had something to share, she was worried I would tell her I’d “found religion.” She was relieved I was only gay.

I wasn’t in a world where being gay is a sin, a perversion, a choice, or a disease. I wasn’t destined to die young, a tragic figure: a warning to everyone else. I was told, by nearly everyone I knew, that it is fantastic to love who you are, to fight back against prejudice. I was scared, but the world around me confirmed what I thought: Accepting my sexuality was a path to the future family I wanted. One more ingredient of that essential Good Life.

Autism didn’t hinder my dating, either. It turned out that being socially awkward was not much of an impediment to getting a guy into bed. It was a much bigger issue in trying to navigate a relationship, but I wound up meeting the most wonderful and understanding man in the world.

But though I was supported, romantically happy, and at ease with myself, I still couldn’t come to terms with my autism diagnosis and the failure I felt it represented. My family initially tried to talk about it openly, but I refused. To me, autism was the thing that held me back. In my mind, it was still the condition of Rain Man and other institutionalized hopeless cases. I must be one of the few lucky high-functioning ones, I thought.

I knew I wasn’t the only one who thought this way. When I had gone to the hospital for diagnostic tests, my Mum had accompanied me; the doctors want to talk to your parents, or indeed anyone else who can give an accurate picture of what you were like as a child. (Autistic children are far better understood than autistic adults, because that is where the money goes.) My Mum told the hospital receptionist that we were there for an appointment, and the receptionist looked at me sympathetically and then asked my Mum: “And how old is Euan?” Already, it seemed, I was expected to be spoken for, not spoken to. I fixed her with a glare and told her myself.

I wasn’t willing to submit to other people having that conception of me — an object, not aware of my surroundings, a broken man — or to having that conception of myself. Disabled adults are sometimes the most forgotten. We’re generally not as cute as disabled kids, and society looks at us as hopeless cases. At most, we are a problem-solving exercise: What can we do with these lost causes so that they don’t get in everybody else’s way? This was what I felt when given the diagnosis with no basis to contextualize it.

When I was growing up, celebrations of gay pride were already common, but I had no concept of being proud of my autism. I knew of no parades in the street. I had no idea how many other people there were like me — if there even was anybody like me. Not that I thought I was special, just uniquely broken and of no concern to a society embarrassed by bodies or brains that do not function typically.

Having my disability diagnosed and explained didn’t make me stop hating it. For that, I needed to meet other people like me. Recently my day job has brought me into contact with other autistic people: first one or two, then more and more. It turns out that autistic people are everywhere. We may not be putting on parades in the street, yet, but we’re not hiding. I just didn’t know how to look. Seven years after my diagnosis, I started learning about autistic culture, not just bare diagnostic criteria. Some people were like me, others radically different. All were autistic. None were failures.

To my joy, I found that the idiosyncrasies that I thought were failings had perfectly natural causes. My hearing is hypersensitive, making it difficult for me to distinguish voices around background noise — I’d thought I was just a terrible listener. The sound of certain fabrics being rubbed is like a needle being scraped against my brain, part of the sensory issues that autism brings along — it’s not just me being fussy or particular. My physical clumsiness and my scattered-brain were part of it too, as was my ability to focus exclusively on a subject I enjoy and my dislike of dissembling (especially to a friend). Online, I discovered autistic people were now speaking, not being spoken for. There is a growing movement for neurodiversity and pride.

These days, I am proud of being autistic in the same way that I am proud of being gay. I’m not some parody of normal, some evolutionary dead-end, one of nature’s mistakes to be pitied for my hardship. I may be atypical, but I’m part of a culture, and we’re all atypical together. It’s true that society at large still prizes conformity over individuality. But now that I have an alternative, I’m getting better at realizing that conformity is not the only way to belong.

I’m a history in progress. I’m gay. I’m autistic. And I’m not alone.

]]>