Category: Solidarity

ableism, Advocacy, Autism, Disability history, Family, Solidarity, Uncategorized

Eradicate Ableism: Our Lives Depend on It

Content warning: detailed discussion of filicide; discussion of Applied Behavior Analysis.
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“If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent.” Samantha Crane, Director of Public Policy, Autistic Self-Advocacy Network

On this blog, we talk a lot about “benevolent” ableism-people being overly helpful or patronizing toward disabled people. But there’s a much darker side to ableism, too. Like other minority groups, disabled people are disproportionately targets of violence and abuse. You may not hear it in the news, but there were 128 disability hate crimes in the U.S. in 2017
But unlike other minority groups, disabled people are targets of one of the most shocking forms of violence: attempted or actual murder by their family members.

The Ruderman Family Foundation reviewed media coverage between 2011 and 2015 and found reports of 219 disabled people in the United States and Canada who were killed by their primary caregivers-mainly children killed by parents, or elderly people killed by spouses. That number, likely an under-report, represents almost one murder per week
It’s a trend that can’t be explained as a few extraordinary cases.

What could possibly drive a parent to harm their own child?

I’m going to present a case study, of an attempted murder that occurred in 2013. And we can examine what happened, and what might have prevented it.

Kelli Stapleton lived in rural Michigan with her husband and three children. Her middle child, Issy, is autistic. According to Kelli, Issy had been aggressive since she was two years old, mainly toward her mother but also at school. When Issy was 13 years old, her mother enrolled her in a private behavioral treatment center for 7 months, and with a strict regimen of positive reinforcement for “good” behavior, the aggression decreased. But, when Issy came home, she started hitting Kelli again. And, Kelli learned that the local public school was unwilling to implement Issy’s strict behavior plan.

Kelli broke down, and devised a plan of escape for herself and her daughter. On the Tuesday morning after Labor Day 2013, she packed up an old van with pillows, blankets, two hibachi grills, and fixings for s’mores. She drove Issy into the woods where they shared s’mores. She gave Issy a double dose of her antipsychotic medication and brought the still-lit grills into the van, and shut the doors. As they slept, the van filled with smoke and carbon monoxide. By the time they were rescued that evening, Issy had developed a traumatic brain injury and was in a coma for four days. Kelli was charged with attempted murder. Ultimately, she pleaded guilty to first-degree child abuse and was sentenced to 10-22 years in prison.

I’m not even going to get into the horrifying amount of support that Kelli got on social media, with posts arguing that this was her only option. Nor will I talk about the disturbing trend of journalists centering disability filicide stories on the killer’s “burden” rather than on the victim. Or the fact that, unlike Kelli, many people who kill their disabled family members get off with much lighter sentences than those who kill their nondisabled family members.

No, I’m a social psychologist interested in predicting and controlling human behavior. So I don’t want to talk about the after, I want to talk about the before. I delved into Kelli’s blog and media appearances to find out what kinds of thoughts, emotions, and behavior precede such a tragedy.

And, the clues were strikingly obvious.

Kelli started a blog exactly one year before her crime, called “the Status Woe.” The blog started innocently enough, with some self-deprecating humor (not involving her daughter) about a bout of diarrhea on a camping trip. But then, the blog quickly turned to the evils of autism. As I read, it became clear that Kelli was all out of love or compassion for her daughter. She had been on a lifelong journey of trying to cure her daughter’s autism, starting with a rigid home program of applied behavior analysis (ABA) during Issy’s toddler years. She’d tried all kinds of diets and supplements, and behavior plans, to no avail.

In one blog post, titled “Autism’s Hard to Love Club,” Kelli wrote that “I have a daughter firmly planted in autism’s Hard to Love club” and then she preceded to describe issy’s overweight and poor personal hygiene to total strangers. In another post, deceptively titled “Inclusion: Doing It Right,” Kelli wrote about how she would draft the “mothers of the class”-peers and older children with helping dispositions- at Issy’s school to be her “helpers” and assigned “friends” in elementary school, and how all the kids wanted to be Issy’s “friend” so they would gain status and approval from adults. (Disability Wisdom readers know that’s not real inclusion!) Embedded in this post about fake inclusion is the comment that when new kids meet Issy, they discover that “Clearly she isn’t “normal.” Kelli also posted videos of Issy’s aggressions on her public blog, and the videos were edited such that the cause of the aggressions was never clear. She blamed Issy’s aggressions on “autism, hormones, and whoknowswhatelse.”

Kelli also gave a radio interview around the same time as she wrote her blog. On the interview, Kelli admitted that her ABA treatment may have contributed to Issy’s aggressions, saying, “I’ve been in her face since before she was two years old” reinforcing Issy’s every act as she tried to shape non-autistic behavior. On the air, Kelli didn’t sound like a murderer. But, her entire focus was on treating Issy. when the psychiatrist on the show asked Kelli if she had gotten counseling for herself or the rest of the family who was impacted by Issy’s aggressions, Kelli kept saying she just needed to focus on Issy and getting Issy’s behaviors under control before taking therapy herself. The psychiatrist warned that aggression was a family issue, that the entire family was involved and that “eventually, someone is going to get hurt.”

I cannot pretend to imagine how hard it must be to live with a family member who is aggressive on a regular basis. Undoubtedly, stress and burnout contributed to Kelli’s tragic choice. But, aggression is not an inevitable consequence of autism. Antisocial behavior never occurs in a vacuum. It not only impacts the entire family, but it is caused and reinforced by interplay between one’s internal neurology and the external environment. And perhaps one of the least-appreciated factors contributing to a disabled person’s alleged behavioral difficulties is ableism in the family unit.

I wonder what it would have been like for me, if my parents had kept me on such a tight ABA leash, getting in my face and correcting my every action since before I was two years old. If I knew that my parents not-so-secretly wished I wasn’t born the way I was and did everything they could to try to change me. If my parents filmed me in my most vulnerable moments and put those videos out along with weight-shaming comments on the Internet. If I had sensory needs my parents and teachers ignored. If I had no outlet for expressing my turbulent emotions during puberty, and if my attempts at communication were dismissed.

That’s right: I’d probably start hitting, too. And I’d probably keep aggressing if I learned that aggression was the only way for me to control my own life.

Issy Stapleton nearly died because of her mother’s ableism, plain and simple. In an interview with New York Magazine after her sentencing, Kelli recounted the day of the crime, saying of her fantasies of the afterlife on that day, “We will be done with autism completely … “For the first time
in my life I am going to be able to have a real conversation with her,
and see her. Get to know her, without the perseverations and the
aggression. In her real voice, not this robot voice.”

Kelli could not bring herself to accept the child she had. She tried in vain to change Issy, and Issy responded with aggression. The violence escalated until Kelli came to the conclusion that a murder-suicide was the only way for her to get the child she really wanted.

Preventing disability filicides goes far beyond just giving parents more respite services or better insurance coverage for therapies. (Indeed, Kelli was on her state’s waiver, where she had nnearly 24-hour help with Issy at home. Other parents with less support don’t hurt their children). Prevention needs to start much earlier. Anyone who plans to become a parent must get good, balanced information about disabilities and come to understand the normality of disability. Because, the statistics show that one in every 88 parents will bear an autistic child. Up to one in five parents will bear a child who, at some point in life, becomes disabled. Disability must be presented in our schools, our workplaces, our neighborhoods as a natural part of the human condition. People planning to become parents must have opportunities to examine their biases about disabilities and eventually come to accept the possibility of having children whose abilities might differ from their own.

From a policy perspective, this might mean having disability studies as a mandatory course in high schools. It might mean that whenever a child is diagnosed with any disability (whether in utero, at birth or later in childhood), the family is automatically connected with at least one self-advocate bearing the same disability. And, it means that when a child or teen presents with behavioral difficulties, assessment and treatment must focus on the entire family unit, not just the one family member manifesting symptoms.

We need to work together to eradicate ableism. It is literally a matter of life and death.
For Further Reading:
Kelli Stapleton Can’t Forgive Herself. Can You?
Untwisting Perceptions: Autism, Parenting, and Victimhood
The Cost of Noncompliance is Unreasonable
Kelli Stapleton. Still Relevant.

Solidarity, The coming generation

“Wait, so I’m like them? Awesome!”

They’d been going to the Buddy Walk for years, she said. They’d participated in conferences, and had been active in the Down Syndrome community. But even while they spent time with lots of other folks with Down Syndrome, they’d never really said out loud to Jessie that she had it too.
When they finally told her, her mom said, her response was, “Wait, so I’m like [this person we know] and [that person we know]???”
Her mom affirmed that yes, she was indeed just like them. And Jessie said, “AWESOME!”
I’ve been asked a thousand times how to tell our kids about their disabilities. This is how.

I normally don’t share posts from nondisabled parents of disabled children on my blog. I try hard to center the voices of disabled people that are too often drowned out by the voices of professed allies. However, I’m going to make an exception for Diary of a Mom, one of the most enlightened parent blogs I’ve seen. The writer has two daughters, one of whom is autistic, and describes herself as an intersectional advocate. Her posts reflect a humble understanding of what a healthy disability identity is, and what her role is as a parent and an ally.

Parents often wonder how to break it to their children that they have a disability. They may anticipate a variety of negative reactions to the news, or they may worry about their own emotions getting in the way of how they frame disability to their children. As this post illustrates, when parents expose their kids to positive role models early and often, the conversation can be a strong disability identity in the making.

To learn more from the perspective of a great parent ally, I encourage you to browse some of Diary’s other posts after you read this one.

Read Diary’s post here

Blind in the City, Solidarity

Blind in the City: Some Straight Talk About Eye Pressing

When I went to the Louisiana Center for the Blind, there were two other young adult students who had the same eye condition as me: Leber’s Congenital Amaurosis or LCA. The three of us became friends, and would joke about being part of an exclusive “club.”

During one of our class discussions, one of the guys with LCA mentioned that he used to press on his eyes when he was a baby. This caught my attention. Eye pressing (also known as eye poking or, in clinical terms, the oculo-digital reflex) involves pressing one’s fingers, knuckles or fist against one’s eye. It’s a common topic of discussion among parents of blind babies and children, particularly those with LCA and related retinal conditions. Appearing early in infancy, eye pressing may be one of the first hints that a baby is blind, as it was in my own case.

After my friend mentioned eye pressing, another student mumbled something like “Hey, I bet he still presses on his eyes.” My friend got quiet, and the subject was quickly changed.

Later I told my friend that I admired his courage for mentioning eye pressing in the class. All too often, blind children grow up internalizing shame about their eye pressing. The behavior alarms and vexes sighted parents, who don’t understand it, and they worry that their children’s eyes will be irreparably damaged, or that the pressing will make their child look more “blind.” Sometimes even the most well-meaning, gentle attempts to break us of the habit can teach us that there is something wrong with us. And, at least, many of us wouldn’t publicly admit to doing it.

My friend’s response was to say, “You know, sometimes when I get really tired, I still do it.” I admitted I hadn’t completely broken the habit either. Then he chuckled and added, “And I’ll bet you anything that [third friend] does it too. But he would never ever admit it.”

For many (though not all) people with certain retinal conditions, eye pressing is a lifelong habit, though we can learn to control it over time. I am told I started pressing before I was 6 months old. As an adult I can control it fairly well in public or when my hands are occupied. I still catch myself and move my hand away from my eye about a dozen times a day on a typical day.

I get so many questions from parents about eye pressing that I want to share some information here about what it is, why we do it, what the consequences are (and aren’t), and how parents and their children can address it in a balanced way. My primary goal here is to take the stigma out of eye pressing, and to offer some insider information based on my own experience and that of others shared with me over the years.

Q: Why do people press on their eyes? It looks painful!
A: Some people think that we press on our eyes to stimulate vision. While that may work for sighted people with intact retinas, I have yet to hear from any blind person who reports seeing lights, colors or other desired visual effects from eye pressing. The most common explanation I hear (which matches my own experience) is that pressure on the eyes simply feels good. Some people have learned to get the same sensation of eye pressing from pressing on their eyebrows, the bridge of their nose, or squinting their eyes tightly shut. Many of us who eye-press also have involuntary eye movements (nystagmus) as part of our eye condition, so I have wondered if eye pressing may simply be a way of settling our eyes down.

Eye pressing is often lumped in with other self-stimulatory behaviors or “stims” like rocking or hand flapping. However, unlike these other stims, eye pressing tends to be a “low-arousal” activity. Nap time or car seat time are prime pressing times for many babies and toddlers. I sometimes press in my sleep, and often when I am awake but tired, or lost in thought. Although anxiety can also be a trigger, this may simply be a sign of lapsing self-control under stress.

Q: Will my child develop permanent damage from eye pressing?
A: This question is hard to answer definitively, because people who eye-press also have lifelong eye diseases. So, when a person develops changes to their eye shape or complications like glaucoma, it is impossible to tell if the problem is caused by the underlying eye disease, eye pressing, or both. It is difficult to find comparison groups of people with the exact same eye physiology who do vs. don’t have a history of eye pressing.

Certainly, some children who eye-press develop sunken eyes, keratoconus (a change in corneal shape over time), or eye infections. Others have none of these issues. It is not clear how much of this is caused by eye pressing itself, but reducing the frequency of eye pressing will reduce the odds of causing lasting eye changes. Any effects are cumulative, so occasional pressing is safer than constantly doing it.

I developed keratoconus as a teen and now am prone to dry eyes. When I have been pressing for a long time, my eye becomes a little sore and irritated. This is my main incentive to curtail the habit in my adult life.

Q: How do I get my child to stop eye-pressing?
A: To unpack this question, let’s consider the nature of the eye-pressing habit, the reasons why controlling it may be desirable, and some ways to balance a desire for control with the need to respect the person’s neurology.

Eye-pressing has been described as a reflex. It appears very early in life, and as such, is an innate habit. That said, it is controllable. Many people report that once they become aware of the habit, they are able to control it to varying extents. However, for most of us, it takes some effort to control, hence why we may press more when we are tired, ill or stressed. Some people can extinguish it completely, usually by working hard and often getting intensive support at first from another person to make them aware of the habit.

Controlling the frequency of eye-pressing may help promote eye health. There is also the social aspect, that sighted people don’t press on their eyes, and so the behavior can create a negative social impression on others.

I do think it is a good idea to make children aware of the negative aspects of eye pressing, in age-appropriate ways. This awareness will help equip them to develop self-control as they get older. For very young children, keeping their hands engaged or using glasses as a barrier can reduce the frequency, but probably won’t extinguish it completely. (Remember naptime). For older children, It is possible to explain in a matter-of-fact, nonshaming way that eye-pressing looks off-putting to sighted people and could change the shape of their eyes over time.

Some parents and educators swear by behavior modification strategies to stop kids from eye-pressing. Common strategies include using code words to alert a child that they are pressing, or developing rewards for periods of control. Such strategies do work, but only up to a point, because they rely on adult intervention. When an adult isn’t monitoring their behavior, a child can simply go back to eye-pressing. To have meaningful control, the person needs to self-monitor in the absence of external cues. Usually, this happens when someone decides they want to reduce or stop their eye-pressing because they want to, not because an authority figure is “making” them stop.

Generally, I advise parents to try reminders or rewards as a way of promoting self-awareness, in a way that fits their family style and their child’s personality. But, parents must also understand that the underlying urge to eye-press doesn’t go away, and that realistically, their child may continue to eye-press at least occasionally. It is important not to restrain, punish, or shame a child for eye-pressing. Unfortunately, I have heard of children having their hands restrained, or being made to write essays on eye-pressing as a means of punishment. Such strategies are not only harmful, but they fail to address the reflexive nature of the behavior. Rather, children can accept that eye-pressing is part of their neurology, and still learn to control it when doing so is advantageous for them.

disability's in the work place, PreEmployment Transition Services, Solidarity, The coming generation

RISE-ing Up and Changing Lives in Northern Virginia

A few months ago, I blogged about my career journey
And my recent half-time contract working with the National Federation of the Blind of Virginia on our Project RISE youth transition program. I haven’t written much on the program here, partly since I try to keep the Weekly Wisdom blog content relevant to a national or international readership, and also to protect the privacy of individual students. However, since our program recruitment is in full swing right now, I wanted to take this chance to share a bit about what we’ve done, get the word out about our future plans, and perhaps inspire others to consider developing similar programs. (Plus, this is my professional blog, and Project RISE is a big part of my professional life at the moment).

This past spring and summer, we served 18 students ages 14-21 who are blind or visually impaired and live in northern Virginia. During monthly interactive group sessions, our students explored careers, wrote resumes and cover letters, practiced professional interaction, and learned nonvisual skills for independent living and travel. We also had a lot of fun! Students learned from each other and from our dedicated blind mentors who are all either working professionals or older college students.

This summer, I had the pleasure and challenge of coordinating work experiences for nine of our students. These included competitive summer jobs, volunteering, or internships geared toward specific vocational goals. We had a student intern in a medical research lab, another at a commercial bakery, and a law firm. A fourth student had a music internship tailored specifically for him, and I will get to see him perform his original music tomorrow evening. It was challenging to find positions for students spread out across a fairly wide geographic area and with a variety of specific vocational interests. But the reward for the students, for us, and for the employer partners has been well worth it.

Since the program started in February, the growth we have seen in individual students is striking. I’ve observed shy students who barely said two words to anyone at the first session, going up on stage to debate with their peers and reaching out to professional contacts on their own. Students with partial sight who voiced discomfort or disdain for their white canes at the beginning began willingly carrying them to our events. Older students modeling self-advocacy for younger students and honing their own leadership skills in the process. These gains may not be tangible at the moment, but they will undoubtedly translate into success at school, at work and in life.

As a pre-employment transition program, we have to provide a specific set of services under the Workforce Innovation and Opportunity Act. Our curriculum may seem complicated, but when I think about what makes our program so impactful, the most important active component, in my mind, is something that is barely mentioned in the regulations. Yet it is something that resonates with my own past. The summer after 7th grade, I recall going to a day camp for nondisabled teens, coming home one night, and bursting into tears. Such melodramatics are very rare for me, and in fact, that was the last time I have ever seriously cried. It was a reaction to years of accumulated microaggressions and the sense that I didn’t belong among my peers, or even in the broader community where I knew few other disabled people. At that particular point, I had nowhere to go emotionally but up.
It was less than two weeks after that night when I first met
my blind best friend
And the tide began to turn. As I found a blind peer group, and later found blind mentors, I was reassured of my belonging. I stopped blaming my disability for frustrations in my life. And I gained the confidence to move beyond my comfort zone.

The community we have established in Project RISE is, in my view, directly responsible for the incredible gains we have seen. Many of our students may be the only blind or disabled person in their family, their school, or their local area. Some have grown up with the daily microaggressions of ableism. Others are losing vision and wondering if their dreams must be deferred. Through our community, they are getting the support to relinquish misconceptions and to embrace their identities as blind people. They are learning that there is a place where they belong and that their dreams are possibilities. As evidence of our community’s strength, 13 of our 18 students will be returning this fall.

Spurred on by the success of our first term, Project RISE will be having another full year of monthly meetings in the northern Virginia area. We are also expanding to offer quarterly meetings and mentoring to blind and low-vision youth across the state of Virginia. To learn more, check out
the Project RISE website
and
follow us on Facebook!

Disabled voices, Solidarity

“Everything in Nature Goes in Curves and Circles”: Native American Conceptions of Disability [Repost]

As Kim E. Nielson notes in A Disability History of the United States, Native American conceptions of disability are unique in that they don’t really exist. There is no language equivalent or even translatable concept for the word disabled, the closest translatable phrase is simply “being different.” … Native Americans do not prescribe to ideas of othering simply because there can be no other in their concepts of reality. Nature is constantly changing so “normalcy is an ever changing process of coming to balance.” Disability is therefore seen as a difference that can be integrated into society. Disability is “only an element of the individual’s existence, not the defining element.”

This week my husband and I are celebrating our five-year anniversary on the beach boardwalk in Ocean City, MD! You can find me listening to my copy of Kim Nielson’s A Disability History of the United States.
Here’s an interesting essay introducing how disabilities are conceptualized in Native American culture.

“Everything in Nature Goes in Curves and Circles”: Native American Conceptions of Disability