Tuesday, February 28, 2017

The Trouble With "Social Coaching" Tech for Autism

M. Kelter
theinvisiblestrings.com

MIT researchers recently announced that they are developing a wrist watch which analyzes a conversation, then provides feedback about the emotional content of the discussion. Though the watch is still early in development, MIT's press for the device suggests it may one day provide autistics with a better way to grasp the subtle nuances of communication -- basically, as a social coach.

PhotonQ-Robotic Home
Pepper, a "Social Companion" Robot
Photo © PhOtOnQuAnTiQuE, Creative Commons license
[image: a white humanoid robot wearing a black tablet
computer, in front of two bearded white young men]
Similar efforts have emerged in the world of social robotics, where it is postulated that autistic children can learn to socialize with the help of mechanical "friends,"that is, robots programmed to teach kids to identify emotions, facial expressions, and so on. Like the watch, these coaching devices are envisioned as being able to bring autistics in line with conventional standards of daily social behavior.

I have no doubt that the intentions here are good. The stated purpose behind these efforts is usually something along the lines of, "We want to help autistic people navigate the social world."

My question for anyone involved with creating or supporting these efforts is: do you know what it feels like to make your way through a social interaction courtesy of external feedback and coached guidelines? Because I do. I can actually describe these things.

Growing up, I did not know how to process body language. I primarily struggled with non-verbal communication and social pragmatics. I was alone most of my life.

As a teenager, I tried to teach myself body language. I observed others. I taught myself to mimic a very basic repertoire of hand gestures and arm movements. I memorized small-talk scripts.

As an adult, I worked with therapists who diagnosed me as being on the autism spectrum. They also encouraged me to commit to memory the non-verbal codes of body language and social cues. They educated me about general conversation patterns. They taught me to both interpret eye contact, and use it myself through simple counting techniques.

There was no wrist-watch or robots involved, but the basic concept was the same: social coaching, designed to help me understand and mimic conventional (non-autistic) behavior.

So, what does it feel like to be trained or coached like this?

All of these efforts -- across the board -- left me feeling exhausted and depressed. They left me feeling more alone, not less.

I did manage to absorb a fair number of the skills they taught me -- I reached a point, for example, where I could navigate small talk. That seems like a minor thing. It is not a minor thing. I reached a point where I could interpret some body language, and some changes in vocal pitch.

But, in moments where I was interacting with someone and trying to use everything I had learned -- in moments where I was mechanically moving my arms through body language, and concentrating on how the other person gestured and spoke -- I felt an equal mix of fatigue and alienation. The mental workload to process it all was just too much, and prevented me from feeling like I was really present. More than anything, this social coaching made my body feel like a marionette that could move in the approved ways, while my mind was off somewhere else, watching from a distance.

It was also ironic. There is a stereotype that autism leaves people “trapped” inside a shell, but these therapeutic attempts to help me act less autistic were what made me feel trapped, not any of my autistic traits. Even when I successfully navigated a conversation, I ended up feeling tired and alone. The experience made me wish I was like other people, and it made me hate myself.

When I hear about the social watches and the social robots, and listen to the stated goals of these efforts, all I can think is: I've been down this road. It left me full of self-loathing and feeling depressed. And thinking that so many autistics have been down this road. Specifically, adult autistics.

These particular forms of coaching technology are primarily focused on providing therapy for children. But, unlike adults, young people haven't had enough life experience to see where these things can take you. It can be hard for them to distinguish feedback that may be helpful, from feedback that may work against them.

Researchers and clinicians can also struggle to predict where these efforts can take those subjected to them. That is, again, because of the factor of experience. Adult autistics can draw from a lifetime of social experiences ... we know the trajectories that are likely to play out. We know that, socially, you can learn to do everything right -- you can check every box -- and you can still feel shut out from a social world that is reliably hostile towards difference.

And yes, I can only speak for myself. People on the autism spectrum can be very different from one another; my experiences are not necessarily representative of others. But I also know that learning to feel at peace in my life required me to learn to identify my differences and work with them, not against them. I had to learn to put myself in situations where my strengths are valued, and to avoid situations where my challenges (sensory aversions, for example) might be problematic.

Self-acceptance like this, like mine, it doesn't get you everything -- but it has to be what you start with, and it has to stay with you. Self-acceptance is a foundation that makes anything good possible.

My fear is that social coaching technology lacks that foundation. It is basically a wallpaper for hiding differences, when autistic kids and adults really we supports predicated first and foremost on self-acceptance.

I should add that technology is not the problem here. Technology is a vitally important component of life for many, many people on the spectrum. That is why when sorting through these issues, it helps to keep a few questions in mind: does this tech empower or conceal autistic differences? Are the goals of any device goals that have been established by autistics, or are they conventional non-autistic standards?

It is only when tech design is driven by personal experiences and the aspirations that arise out of those experiences, that people have a much better chance of discovering something special and truly beneficial -- whether the beneficiaries are autistic, or not.

Wednesday, February 22, 2017

Parents: Don't Hide Your Children's Autism Diagnoses From Them

Reid Knight

Dear Parent who is considering not telling your child about their autism:

Like many autistics, I found out about my autism through Google.

Unlike many autistics, Googling didn’t lead me to a self-diagnosis of autism (though I view self-diagnosis as just as valid as a professional diagnosis). My parents only told me I was autistic after looking at my internet history, and finding out that I already knew.

I was fourteen years old when, out of curiosity, I Googled the doctor I had been seeing for as long as I could remember -- and discovered that the medication cocktail I had been taking since I was a toddler was actually an “alternative” treatment for autism. For twelve years, I was given 10 to 20 pills each day, without being told what they were for. I was also subjected to Applied Behavioral Analysis (ABA) and other therapies without being told why I needed them.

Family
Photo © Kamaljith KV, Creative Commons license
[image: Black & white photo of Indian parents holding a
toddler's hands, standing in ocean surf, seen from behind.]
My story may be an extreme one, but there are many reasons why a parent might choose not to tell their child that they are autistic. In my case, my parents claimed that my treatment cured me of my autism (although if that was the case, then it didn’t make sense that I was still following the treatment protocol, but I digress).

Along the same lines, some parents don’t see their child’s autism as a "big enough" issue to warrant telling them about the label, or they don’t want their child being seen as “different.” Other parents have expressed fears that their child will use their autism as an excuse to misbehave, or not reach their full potential.

All these examples boil down to the idea that letting a child know they are autistic causes more harm than good. Let me tell you why the opposite is true.

You may think that an autistic child won’t notice they are different than their non-autistic peers unless someone tells them, due to a supposed lack of social awareness. I have not met one autistic person (myself included) who hasn’t noticed their difference early in life. For me, noticing came through being bullied at school and at home. And since I didn’t know I was autistic, I just assumed there was something wrong with me and that I deserved what I got. I learned that intrinsically, I was less than a person, since I didn’t have a framework to tell me otherwise.

When you learn that you are less than a person, being abused becomes normalized and expected. When I was six years old, I had a meltdown in a music class due to sensory overload. The teacher’s response was to lock me in a closet for the duration of the class. It was dark. I was terrified. It was normal. I deserved it. I can only hope those aren’t the type of thoughts you want your child to have.

Which brings me to another point: because I wasn’t told I was autistic, I had no idea how to advocate for myself and my needs. Rather than using my disability as a crutch, it was not knowing about my disability that led to me being unable to reach my full potential. Trying to fit into a world that seemed out to get me wore down my physical and mental health. My grades slipped, and I got dangerously close to dropping out of school entirely. I lost the few friends I had, and became consumed with shame about myself and the things I couldn’t do, things that seemed to come so easily to everyone else. I didn’t know that with the right accommodations, I was fully capable of doing most of those things -- and that there was no shame in choosing not to do certain things that were too difficult for me.

If I had been told I was autistic before I was locked in the music room closet, maybe I would have known to ask for a break when things got overwhelming. Or maybe my teachers would have had a plan to help me de-escalate my meltdown. Or, even if I still got locked in the closet, I would have had the knowledge that it wasn’t an okay thing for an adult to do, and could have told another adult about it. But since I didn’t, I blamed it all on myself, and stayed silent.

Perhaps the worst part of not knowing they are autistic is that, inevitably, your child will find out someday that they are autistic -- whether it be from the Internet, like me, or just from an acquaintance or service provider offhandedly mentioning it. And when that happens, what will happen to the trust between you and your child? They will realize you kept very important information a secret from them for their entire life. And it’s likely you also told other family members and friends about your child’s autism, but not your child. That will make your child feel like they were the only one who didn’t know. Nobody should ever feel like everyone else knows more about their own body and their own life than they do.

And once that happens, without being able to trust their family, who will they have to fall back on for support? Navigating life as an autistic person is difficult enough without a reliable support network. Do you want your child to feel alone in their fight?

It has been more than a decade since I found out I am autistic, and I am still working through the trauma from not knowing -- and it is likely something I will continue to struggle with for the rest of my life. The tools that are helping me to heal have overwhelmingly come from within the autistic community. I can only wonder what my life could have been like, if I had been given access to such resources as a child.

Panents, you have the chance to give your autistic children coping tools. When you decide to do so is a very personal decision, and I understand that. But please consider that my negative experiences from not knowing about my own autism were already happening by the ages of five and six.

Please don’t wait too long, or the damage from your child not knowing they are autistic will already have happened.

Sincerely,

An autistic adult who would have been better off knowing

Wednesday, February 15, 2017

Why “School Choice” Is Problematic For Students With Disabilities

Kris Guin
queerability.tumblr.com

Students read in a classroom
Photo © World Bank, Creative Commons License
[image: Students of different backgrounds and abilities, reading books.]
During the questioning phase of Betsy DeVos’s Senate confirmation process for U.S. Secretary of Education, DeVos, a “school choice” advocate, demonstrated a lack of knowledge about, and a lack of commitment to, enforcing the Individuals with Disabilities Education Act (IDEA) -- the law that requires schools to provide a free, appropriate education for students with disabilities. DeVos's ignorance about IDEA has caused many individuals with disabilities and their families to become very concerned about their or their family member’s access to public education, and understandably and rightfully so. Individuals with disabilities and their families rely on robust implementation of laws like IDEA for equal educational opportunities.

Stemming from this concern are calls from some to pull children with disabilities out of public education, and then homeschool them. I, and many other advocates who are concerned about equal educational opportunity for students with disabilities, have some concerns about removing students with disabilities from the public education system.

There are devastating financial implications of removing students with and without disabilities from the public school system. According to the National Center for Education Statistics (NCES), the Department of Education spent $12,296 per student enrolled in public education in the 2012/2013 school year. Some of that money was spent on expenses directly associated with educating the individual student, and some of it was spent on shared expenses of educating all students like school building maintenance, staff and faculty salaries, etc. Again according to NCES, 12.9% of all students enrolled in public schools in the 2014/2015 academic year were students with disabilities who were supported by special education programs. If even half of all students with disabilities who received special education services were withdrawn from public schools, public schools would lose 6.45% of their funding. This will have devastating impacts for already underfunded schools, and compound their existing racial and economic disparities. And many low-income families can’t afford to take their children out of schools and homeschool them -- the parents have to work, and also may rely on the schools' free and reduced-cost meal programs.

As an autistic person who was withdrawn from the public school system and homeschooled because my public elementary school wouldn’t give me the accommodations I needed, I can understand parents' impulse to want to protect children with disabilities from repeating my experience now that DeVos is in charge of the Department of Education. While I was involved in the decision to withdraw me from public schools after the fifth grade, and did benefit from some parts of homeschooling, in hindsight, I wish I had continued with public education. I left the public school system thinking, “Public school isn’t for me. I don’t belong there.” which is a devastating thought for any child to have. Every child, including LGBTQ children, children with disabilities, immigrant/refugee children, Muslim/Jewish children, and children of color, has the right to a public school education, and has just as much of place in public schools as their straight, cisgender, white, Christian peers without disabilities do.

Why don’t we all stick together and fight to ensure that every public school is safe and inclusive for all, including students with disabilities? For those who are privileged to even think about homeschooling your children, why not become active with your school board instead either as a citizen or a member of one? How about being active with your school’s PTA or with a local advocacy organization that advocates for safe, inclusive schools? Why not spend your time contacting your elected officials, and urge them to support safe, inclusive public education? Why not advocate for the things we appreciate in homeschools and private schools to be available to all in public schools?

Monday, February 6, 2017

Autism and the Burden of Social Reciprocity

Maxfield Sparrow
unstrangemind.com

The fall of the Berlin Wall - November 1989
Breaking Down Walls That Shouldn't Exist
Photo © Gavin Stewart, Creative Commons license.
[image description: People using a wooden ladder
to climb over the Berlin Wall during its 1989 fall.]
One of the images that comes up again and again in articles about autism and Autistic people are photographs of children behind panes of textured glass. Their hands are usually pressed against the glass and their faces are distorted beyond recognition by the swirls and ridges in the surface of the glass. The images are meant to symbolize how we are “trapped inside autism” just waiting to be broken free from our “prison.” Journalists and their editors love those images; Autistic adults tend to really hate them.

Years ago, when I was struggling hard with a deep self-loathing that I had projected onto my autism diagnosis, I embraced those images as well. I had been terribly, sometimes violently, bullied and ostracized by my age peers. I had been mistreated by many of my teachers, some of whom openly expressed their disgust with me.  My fourth grade teacher, for example, put my desk inside a giant cardboard box and told my classmates that I had to sit inside the box because it made her sick to look at me.

I spent my childhood, roughly age 5 to age 15, in therapy. Even though no one told me that I am Autistic, I knew there was “something wrong” with me because no one else I knew admitted to regular visits to a child psychologist. So when the children at school rejected me with ever-increasing demonstrations of cruelty I naturally assumed that I was at fault. I was even explicitly told by school faculty and family members that I was bringing all the bullying on myself by “insisting on being so different.” It’s a familiar life story: When I talk about these things with groups of other Autistic adults, lots of heads nod, and I hear lots of sad and angry recountings of similar stories. When I type my childhood stories online, the flood of “me too”s that bursts forth is staggering.

We Autistics get bullied and ostracized at a depressingly high rate. If you are Autistic, you’re probably nodding your head right now. If you are the parent of an Autistic, you’re probably nodding along as well. It breaks your heart to see your child so excluded, right? It breaks our hearts, too, living that reality.

That “trapped behind glass”  image resonated with me because I felt like the painted bird described in Jerzy Kosinski’s novel of the same name. In The Painted Bird, a grim tale of a young Polish boy orphaned at the height of WWII and wandering the countryside viewing and experiencing wartime atrocities, Kosinski tells a brief, symbolic story of a sadistic game in which a bird is captured and painted a different color. When released, the bird follows its instinct to flock and tries to rejoin the other birds. Because the painted bird looks and smells so different, however, the flock follows its instinct to protect the group against outsiders. The flock peck at the painted bird to chase it away, but the instinct to be with the flock is so strong that the painted bird persists in the face of pain and ostracism, trying again and again to join the other birds until it is pecked to death.

Underlining the symbolism of staring through a glass barrier at others enjoying a social life that I was unable to participate in, I felt a deep kinship with Nick Carraway, the narrator of F. Scott Fitzgerald’s novel, The Great Gatsby, which I first read when I was 13 years old. At one point in the novel, Nick mentally goes outside and looks in through the window. The passage describes his feelings of distance from the raucous party life he has found himself in and he describes feeling isolated from everyone else:

"...high over the city our line of yellow windows must have contributed their share of human secrecy to the casual watcher in the darkening streets, and I was him too, looking up and wondering. I was within and without, simultaneously enchanted and repelled by the inexhaustible variety of life."

I latched onto that image as it contained such piercing elements of my own lifelong sense of isolation from others. I felt enchanted by the lives those around me had, and the ease with which they seemed to discern what was expected of them, and the grace with which they lived up to those expectations. Yes, the people around me growing up struggled, too. But their struggles were so different from mine and on such a different scale from mine that they were virtually invisible to me.

Yet also, and much more strongly than the enchantment, I felt repelled. I felt that I was repulsive to others, and I'm pretty sure I was, based on how they treated me. And I felt repulsed by them. I hated so much of what they did and said, yet I wanted more deeply than anything to be accepted by them, like the painted bird I was. They were repulsive and I was repulsive and the entire social world seemed little more than a cesspool of filth. My only solace was long walks alone in the woods and time spent with friendly animals.

Given these formative experiences, it is little wonder that I so identified with the alienating and objectifying symbol of autism as the child-trapped-behind-glass. My entire existence had groomed me to take 100% responsibility for my mistreatment and isolation. When I was finally told that I am Autistic, I was angry. I wanted to be fixed. I wanted to be better. I wanted to know how to fit in and be accepted by others. And my response to being told that I'm Autistic was a huge raise in my already well-cultivated self-disgust. I wanted some kind of pill or therapy that would make me “normal” and the doctor was telling me that I would never be normal, that this thing that had dogged me my entire life was... me. It was a deeply rooted part of me that was never going to go away.

I went through a lot of depression and anger and self-loathing and internalized blame for many years to get to where I am today. It was hard work to overcome the effects of all that bullying and isolation, and accept my Autistic brain and nervous system as a normal variation in the great diversity of human expression, to love myself for who I am right now, to strive to become the best person I can be without feeling pressure -- internal or external -- to try to pretend to be someone or something I am not. I still have plenty of moments when I feel like Nick Carraway with my face pressed against the glass, drawn to others but separated from them by invisible barriers I can’t figure out how to get past. But I no longer live full-time outside that mental window. I have found connection, and in the many cases when I haven’t been able to figure out a way into the party I’ve found greater joy focusing on my strong interests and working toward goals that are important to me. I am not as lonely as I used to be, despite still being every bit as Autistic as ever. A key factor in coming to accept and love myself has been letting go of my assumed responsibility to carry all the blame for my social failings.

So it was with great gratitude that I read the report of a new meta-study of the first impressions that non-autistic people have of Autistic children and adults. Researchers in fields related to psychology, communication disorders, and brain sciences from the University of Texas at Dallas, Indiana University, and Emerson College collaborated on an evaluation of three rigorous studies examining the differences in the first impressions people have of autistic and non-autistic people. Their conclusion should surprise no one: across several rating factors, at different ages, whether viewed in still photographs captured during unscripted conversations or in audio-visual format during auditions or free description of emotional past experiences, Autistic men and women were consistently rated lower by observers.

In short, people have much less interest in getting to know Autistic people, based on even the briefest of first impressions. Women were judged more harshly than men in these experimental scenarios. Young boys, around age 12, were judged just as harshly by adults as by their age peers.

This is scientific validation of my personal choice to let go of some of the blame I had been shouldering all my life for my social struggles. In the discussion section of their paper, the study authors write that, “[t]he reluctance of TD [typically developing] individuals to engage in social interactions with their ASD [autism spectrum disorder] peers further limits the opportunities for individuals with ASD to practice their already fragile social skills. This can have a significant negative impact on the ability of socially aware and socially interested individuals with ASD to improve their social communication abilities and work toward more successful social integration.”

In other words, Autistic people can’t take all the blame for underdeveloped social skills because non-autistic people actually are actively avoiding us, limiting our access to opportunities to practice being social in real-world situations. The study authors found that Autistic people have every bit as much desire for friendship and human contact as non-autistic people and our UCLA loneliness scores were significantly higher than non-autistic people’s, but our ability to socialize is limited every bit as much by social ostracization from others as it is by our own neurology and the challenges to socialization it can present for us.

The studies repeatedly underlined the importance of first impressions. A negative first impression held true no matter how much further exposure a person was given to reassess that first impression. But there was one scenario in which the Autistic people left a positive first impression: when people read a transcript of their words instead of seeing and hearing the Autistic people saying those words, observers rated them as more likable and more intelligent. In fact, in the scenario where observers just read the written words of Autistic and non-autistic people, they rated both groups the same. For non-autistic people, the written transcripts were their lowest-rated mode of communication, although only by a small amount. For Autistic people, the written transcripts were their highest-rated mode of communication by a very significant margin.

Written communication is the great social equalizer.

Remember this if you start to fear your Autistic child is spending too much time interacting with others online and not enough time interacting with others face-to-face.  Online communication is a valid accommodation for the social disability that comes with being Autistic.  We need online interaction and this meta-study demonstrates exactly why that is the case.

I couldn’t help wondering, since the study showed the durability of first impressions and the positive response to the written words of Autistics, with all visual and auditory cues removed, could we mitigate childhood bullying in any way by having a class of students meet first online, in text, and form their first impressions of one another in that format before ever meeting face-to-face?

In the early ‘80s, I first began communicating with others online, through internet bulletin boards called BBSes. You could hook your computer -- mine was a Commodore 64 -- to your telephone with a modem and call someone else’s computer. Once there, you could type messages to other people and even access computers all over the world through interfaces like FIDOnet. Getting online was revolutionary and may have saved my life.

When I started getting on bulletin boards and typing to other people, I was completely friendless. Not only was I rejected for looking, sounding, and acting weird, but I was a bed-wetter up to age 15 so I reeked of urine every day because I spent my nights marinating in it, soaking it into my pores and waking with the wrinkly fingers and toes of someone who’s spent too long in the bathtub.  Through the day, I would sweat my own pee back out, much like an alcoholic reeks of gin because it’s coming out through their pores. I had terrible hygiene on top of that because I hated the shower and never had time in the morning for a bath. My hair was uncombed and in my eyes. I took no care with my clothes. Of course I was friendless: I was kind of disgusting to be around.

But when I got online, no one could see (or smell) that about me. All they could see was my words and ideas, and that was what people judged me by. For the first time in my life, I was not found lacking. I made friends of all ages. I was respected and liked. The difference between offline and online communication could not have been more dramatic.

This new research demonstrates that Autistic people get the same isolating treatment when no one can smell them. The researchers found that, other than written communication, observers were less interested in getting to know Autistic people whether they only saw them, only heard them, only looked at snapshots of them. The criteria for rejection were based on multiple factors: physical, auditory, eye gaze, facial expressions, clothing, grooming, posture, movement -- an entire potpourri of human expression. Everything except the actual content of their communication.

The take-aways? Autistic people have valid things to say and people want to listen with respect, if they are helped to get past our awkward appearance and presentation. The blame for social struggles is not one-sided, but shared by everyone, just as is the case in any human interaction. It’s not just us.

We, society -- parents, teachers, professionals, everyone -- must work to help Autistics integrate better with the world. Understanding that it’s not about “fixing” Autistic people but rather about finding ways for people to interact that don’t sabotage Autistics right out of the gate -- this is crucial to that work of integration. This new research, and the future research that will build on the foundation these researchers have laid with this study, must be shared and understood if we are ever going to combat the bullying, loneliness, unemployment, school drop-out rates, and so many other barriers to a satisfying life that Autistic people are confronted with.

It’s time for non-autistics to accept their share of the burden of social reciprocity. It’s time to admit that the world has not been meeting us half-way. It’s time for people to learn to be more willing to accept others who are different from them. Stop shutting us out and blaming us for the invisible barriers between us. We can’t shatter that glass wall until we acknowledge that it’s not solely an Autistic thing: you’ve erected that wall of glass between us every bit as much as we have. Let’s tear down the wall together.

Wednesday, February 1, 2017

Tom Perez: The Political Leadership Our Disability Community Needs Right Now

Tom Perez, upholder of the ADA
source: Wikimedia Commons
[image: Tom Perez, a Dominican-
American Man with a goatee and
glasses, in front of a sign reading
"Next 25 Years of the ADA"]
The bigotry-rooted horrors of the first two weeks of the Trump administration have been coming at dismayed Americans almost faster than we can keep up with them. Those who are reeling, from today's appointment of civil rights slackard Jeff Sessions as Attorney General, yesterday's nomination of Neil Gorsuch—who has ruled that autistic students don't deserve equal education rights—for the empty Supreme Court justice seat, or public schools enemy Betsy DeVos's pending confirmation as Secretary of Education, may be wondering who we can rely on to protect our community's rights.

I have an answer for you: Tom Perez. Former Obama Labor Secretary Perez is running for chair of the Democratic National Committee, the organization that guides the Democratic Party's strategy and policy and which will decide on new leadership next week. And he is a champion for disabled Americans.

I already had high hopes for Perez before last week, as I wrote at The Establishment: "We need a leader like Perez, a former civil rights lawyer, if we are to protect the rights and well-being of people with disabilities and push back productively against Trump’s discriminatory beliefs, staff, and supporters. "

Then, a few days ago, I was fortunate to join a disability-centric conference call with Secretary Perez, and got even more specific information about how Perez can protect the rights of autistic people and students, and— importantly—what he thinks we can do individually to make a difference.

As Ari Ne'eman, Autistic Self Advocacy Network co-founder and past president noted in his introduction to Perez, "Not only does Tom get our community, but he also has a history of taking on our fights — and winning them." He went on to note that Perez has been unique in fighting for the disability community's rights as equals, not as a second-tier minority group, or second-class citizens, in schools, in communities, and in workplaces.

When Perez himself got on the call, he emphasized the role partnerships play in the kind of transformations we need to make happen, for instance the team effort behind his enforcement of the Olmstead decision in Virginia, which gave thousands of people with disabilities living in institutions "meaningful" opportunities to live in the community instead. He didn't champion those disabled Virginians' rights on his own—he worked with teams of lawyers from Legal Aid and other civil rights organizations. In other words, we are stronger when we band together—ideally, with leadership like Perez inside government, and with expertise-laced partnerships outside of government.

Perez also emphasized the need to challenge the status quo, and not be complacent incrementalists. He says he would never have been able to effectively challenge and secure the rights for people with disabilities in states like Georgia and Delaware without "cracking a few eggs," and going up against fierce challenges from both Republican and Democrat Governors.

People with disabilities have the same hopes and dreams as everyone else, which is something Perez explicitly recognized during the call. But to secure and ensure our community members' rights as Americans and as human beings, we have to take action. We have to be aware that Trump's proclamations will increasingly encroach on the rights on people with disabilities. As Maria Town noted on Twitter today,

When I had the chance to ask Perez directly what individuals like me and you can do to make a difference, his answer was to "run for office," and get involved. He assured me that "if you do, the DNC will provide training." He said that the Democratic Party is the party of opportunity, and needs to recruit more people. He wants to hear about the issues that matter to people, especially about the issues that "keep you up at night," so that the party can take action.

Please, follow Secretary Perez's lead, and take action. And until next week, I'll be crossing my fingers and toes that his party sees fit to elect him as their chair.