Category: Disability history

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.
.
.
.
“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.

DeafBlindness, Disability Community Leaders, Disability history

What Does Helen Keller’s Legacy Mean to the Organized Blind Movement and the World Beyond? [Repost]

Many of us saw the Miracle Worker movie as children. We learned about a little girl, Helen Keller, born in the late 1800’s. According to the familiar story, Helen Keller became deafblind and was a frustrated, defiant child, until a hero named Annie Sullivan transformed her life with the gift of communication.

Rarely, though, do we hear about Helen’s life and work after the childhood “miracle” bestowed upon her by Ms. Sullivan. Nor do we often think of Helen Keller as a change agent in her own right. The following article provides some glimpses into Helen Keller’s adult life and work, and some speculations on how she might have fit into modern-day disability activism.
What Does Helen Keller’s Legacy Mean to the Organized Blind Movement and the World Beyond?

Advocacy, Disability history, Past, Present, and Future, The coming generation

RISE Up! and Fan the Flames of Change

One day about a week before starting my first year of college, I shared a paratransit ride with a middle-aged woman who had become disabled from a brain tumor. She told me that she had been employed as a social worker, but after losing some vision and motor function on one side from the brain tumor, she had lost her job and was unemployed for the past six years.

That night in my diary, I wrote with shock and concern about her unemployment. I was confident that she could find work if she just believed in it enough. I said I wanted to be a professional who could support blind and other disabled people to reach their potential. I wrote that “no blind person will be on Social Security if my dream comes true.” But then, I wrote that I didn’t want to work within a bureaucratic system because “bureaucracy will only slow me down.” The diary entry concluded with a clear vision, but no clear plan of execution.

At that moment I had little awareness of the systemic barriers that keep disabled people unemployed, nor did I understand the complex intersections between disability, socioeconomic status, race, gender, and other social categories. I had just graduated from one of the most privileged public high schools in my city, with plans to study biology and become a doctor or a biomedical researcher. I believed that a disabled person could do anything they wanted to do, if they thought it was possible. Employment barriers seemed entirely artificial to me. Yet even then, I recognized that a change agent was necessary to bring down those barriers.

The drive to be a change agent was what guided me through four years of college and six years of grad school. I got involved in the National Federation of the Blind, where I learned how to make change by mentoring and being mentored, through legislative action and public persuasion. In that organization I met many blind people from all walks of life who struggled against low expectations and negative public perceptions. At the same time, I learned that there was an academic discipline devoted to studying, among many other things, how negative public perceptions of groups originate and how to change them. As a scientific thinker, I was intrigued by big questions. Eventually I chose the Ph.D. path, and four years ago Wednesday I defended my dissertation in social psychology.

I was always torn between wanting to make change at the level of the individual, one person at a time, and wanting to make change at the level of the entire social system through research and policy. I struggled with the threat of bureaucracy slowing me down on both levels. On one hand, I feared that if I just worked with individuals (as a vocational rehabilitation counselor for example), my impact would be constrained by the problems embedded in our service systems. On the other hand, if I confined my activities to researching and writing from the ivory tower, I feared that those discoveries would only reach other academics and never make their way down to the individuals who needed them most.

Ultimately, I figured that a doctoral degree would give me the most clout to make change. So, I weathered the storms of the doctoral journey. I fell in love, then turned down a near-perfect professor job offer in a small town where my then-fiancee feared he wouldn’t be able to find work. After graduation, I took a postdoc fellowship that broadened my knowledge and skill set, and competed unsuccessfully for a handful of academic jobs, none of them ideal. Eventually my husband found a federal job, and I created Disability Wisdom Consulting in the spring of 2016. Over the past two years, in partnership with some dynamic clients, I have had the pleasure of generating social-scientific knowledge about disability issues and bringing it to the people and groups with the most capacity to implement it-through my research, training, and knowledge translation services

Then, just two months ago, my professional life took an exciting turn. I became the deputy coordinator for a new pre-employment transition program for blind youth ages 14-21 in northern Virginia. I serve in this role approximately half-time, while still maintaining my Disability Wisdom Consulting operations.

We call the program Project RISE (Resilience, Independence, Self-advocacy, and Employment). Modeled after similar programs in a handful of states, we hold monthly meetings where students learn about a range of career-related topics from blind professionals. They also learn independence skills like cooking, budgeting and using public transportation. Notably, our program is unique from other pre-employment transition programs in that all our core staff are blind and the students receive group and individual mentoring from actually-blind people who demonstrate what is possible for them and can truly relate to their experiences.

One of my roles as deputy coordinator is to compile student progress reports. Due to my natural affinity for data, I love doing this. In fact my boss teased me because I seemed more excited about the reports than about the actual meetings! In the current round of reports, we are compiling the results of students’ career exploration activities. Our students want to become doctors and lawyers, teachers and engineers, programmers and musicians, writers and chefs. Most have multiple interests. And no career aspiration is written off because of disability.

As deputy coordinator I get a chance to help develop the program at a high level. But I also enjoy opportunities to mentor individual students. I gave one student feedback on his resume and shared internship referrals with another. I discussed careers in the psychology field with a third student, chatted about the challenges of dating as a blind person with a fourth, and connected several with blind professionals working in their fields of interest. It is a treat to share my own life experience with young people who are eager to apply it in their own lives.

Then one day last week, I was invited to call into a student’s transition meeting. I remembered how disempowering it could feel to sit at a table of professionals talking about me, but rarely including me in the conversation. I called the student before the meeting and we discussed ways he could participate. During the meeting, I invited him to share what he had been learning in our program. He was reticent at first, but gathered confidence, and eventually spoke proudly about his experience using a cane for the first time. He discovered that his voice mattered. At the very end of the meeting, he spontaneously told everyone that when he gets a little older, he wants to go around and give public speeches. As the others in the room were packing up to leave, I heard him say he wants to change the world.

After I hung up the phone, I couldn’t stop smiling. I was struck by the flame of passion that burst forth when a young man discovered his voice and the confidence to use it. Just like me at his age, he expressed a clear vision without a clear plan of execution. But, plans of execution will only slow us down.

As a society, we need our young people to drive change. As the recent teen walkouts suggest, youth are not just our future, but our present too. We need to nurture the small flames of passion and inspiration that ignite in young people’s minds-whether it happens in a paratransit van, in bed at 3 a.m., or at the very end of a transition meeting. These flames come from people who have not yet become jaded or “burned out” by the negative realities of our society. We must never extinguish these flames in the name of realism. Instead, we must offer the benefit of our life experience to feed those individual flames and bring them together into a massive fire. Only then can we build the cultural shift that will break down misconceptions keeping us from our dreams.

After 15 years, I now have a better understanding of the complex factors keeping people with disabilities from full participation in the workforce. Removing those barriers will require change on multiple levels. But there is still power in the idealistic belief that it will happen. While I have no idea where I will be standing in another 15 years, nor where our students will stand, I am glad to be standing in the fire with them.

Disability Community Leaders, Disability history, Solidarity2, The coming generation

Remembering Darick Williamson

Last week, unexpected sad news came to the Louisiana Center for the Blind (LCB) extended family. Darick Williamson, cane travel instructor and a teacher of future cane travel instructors, died suddenly from a heart attack on March 22, 2018. Darick was my cane travel instructor when I was an LCB student ten years ago. He also taught and mentored several of my blind friends who are now teaching cane travel in schools and adult training centers across the country.

Like many LCB alumni, I have struggled to find words that can give adequate voice to Darick’s legacy. I could share stories of the adventures I experienced under his instruction, the lessons I learned about orienting myself and moving about in unfamiliar environments, and the confidence I gained through even (and especially) the scariest of those adventures. I could share how, as a man who happened not to be blind himself, Darick truly understood and conveyed his belief in blind people’s ability to travel safely and efficiently. But I cannot find the words to fully capture the impact he made, directly and indirectly, on hundreds of blind people through his students who became cane travel instructors themselves and passed his philosophy on to their own students. Instead, I will simply share his obituary, and a link to his writings for the Professional Development and Research Institute on Blindness (PDRIB), in the hope that his words will continue to educate and inspire.

Darick’s Blog Channel
Darick’s Obituary

Disability history, research

#HandsOffMyADA: Disabled Activists Grieve Passage of HR 620

Last April, I blogged briefly about the ADA Education and Reform Act of 2017, also known as HR 620. Yesterday, this law passed the House of Representatives by a vote of 225 to 192.

The ADA was passed more than 27 years ago to protect disabled people’s right to participate in all aspects of public life. The ADA requires that all entities serving the public make their facilities, communications, and operating procedures accessible. Business owners have now had more than 27 years to learn about the ADA and to make necessary modifications, and ample technical guidance exists.

HR 620 weakens the enforceability of the ADA by placing a greater burden of proof on individuals filing complaints. It would require individuals to give a noncompliant business written notice of an ADA violation that details the specific section of the ADA being violated, wait 60 days for the complaint to be acknowledged, and then wait another 60 days for the access violation to be resolved before legal action can be taken. In some cases, a business can avoid litigation by claiming that they have made “substantial progress” toward removing an access barrier, without removing the barrier altogether.

A disabled college student can’t wait four months for a course using inaccessible software to be fixed. A wheelchair user who can’t access a social clubhouse with stairs doesn’t have four months to wait to be included in a meaningful social activity. A working-class American who was denied a job due to disability discrimination doesn’t have four months to wait for a paycheck.

But what concerns me most of all about this bill is the increased burden of proof it places on disabled people to identify and detail accessibility barriers. The purpose of the ADA was to make access a human right. Disability is a thing that affects all of us, directly or indirectly, and access should be a collaborative process between businesses and customers. Businesses should be incentivized to build access and universal design into their operations from the ground up. Instead, HR 620 may encourage businesses to ignore access considerations until a specific individual files a detailed complaint, and then take their time implementing a fix. The entire tone of the legislation seats disability as a problem residing in an individual, rather than inclusion as a right that ends up benefiting the entire community, including the businesses themselves.

I had an exceptionally busy workweek, so I spent less time than usual on social media. But when I did log on, I saw disappointment, sadness, and worry in the posts from my disability activist friends. I saw posts from individuals who came of age before the ADA was passed, and who worry that we are sliding backward into that pre-ADA era. I saw posts from younger people wondering if their own battles for access to courses and jobs might become even more challenging as a result of this bill. I saw disability activists of all ages, races, creeds, and socioeconomic backgrounds feel that their disabled identities were devalued and dismissed by the narrow Congressional majority who passed the bill.

We have lost a battle, but we have not lost the war. As of yet, there is no companion bill being considered in the Senate, and a companion bill must pass the Senate before the ADA Education and Reform Act has a shot at becoming law. We must stay vigilant, and we must make it clear to our elected officials that access is a universal human right.
Find out how your rep voted on HR 620