The coming generation Archives -

“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

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!

Autism, Past, Present, and Future, Solidarity, The coming generation

On Being a Disabled Introvert and the Follies of Social Skills Training

In my earliest childhood memory, I am standing in a room that is not in my home. I remember hearing the words “San Diego,” one of my parents handing me a piece of banana and then walking away. I was likely younger than 2 at this point. I remember the words “San Diego,” the taste of the banana, but most of all, what I remember was the sense of peace I felt standing alone for just a moment, with nobody talking to me, touching me, or trying to engage my attention. My parent was near, but I was alone in my little space, and it felt glorious.

Several of my favorite other early-childhood memories involve the joy and peace I felt spending hours in my bedroom listening to music, lying quietly with my thoughts, and when I got old enough, reading. I am told that in my toddlerhood, when I heard the doorbell ring or discovered that someone was visiting our home, I would head off to the quiet of my bedroom. This behavior deeply concerned my teachers at the local blindness agency where I received early intervention services. They were worried about my socioemotional development. But in relaying this story, my dad-a smart, funny, loving man who just happens to be an introvert-told me he understood

When nondisabled children prefer quiet activities or have quirky interests, they might be considered a little odd or unusual, and adults might make a few attempts to encourage them to be more social, but usually it’s accepted that this is part of who they are. In contrast, when disabled children display any kind of social behavior that deviates from the developmental charts, alarm bells sound, and often an entire team of adults swoops in to try to save these children from social isolation. As my fellow blind blogger, Meagan Howell, writes (full post is linked at the end):

…my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it. Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready.

Most disabilities are perceived as social liabilities, and this perception has a kernel of truth-disabled people of all ages are more likely to encounter abuse, bullying, and exclusion than their nondisabled peers. In addition, certain disabilities can change the ways in which children develop social skills. For example, children with sensory disabilities may not be able to directly observe all aspects of other people’s social behavior. And, one common feature of autism (according to autistic self-advocates) is “difficulties in understanding or expressing typical social interaction.”

While it is true that disabilities can alter the process of social development, prevailing beliefs about how to intervene are often based on problematic assumptions. Social “deficits” are often expected in disabled children, and the popular solution for these “deficits” involves top-down instruction from nondisabled educators. “Social skills training” is considered a part of the “Expanded Core Curriculum” in instruction of blind children, and is popularized in the education of autistic children as well. All too often, well-intentioned social skills programs for disabled children continue to perpetuate long-lived power imbalances and societal prejudices. For example, when rooted in a culture that values extroversion, social skills programs may ignore and devalue the needs of introverts like myself and Meagan. More insidious, “social skills training” is often code for “compliance training,” where the hidden curriculum involves teaching a disabled child to comply with nondisabled norms in order to be accepted. Rather than instilling competence, confidence and well-being, inherently compliance-based instructional approaches can instead instill shame, insecurity, or self-loathing, as children may feel compelled to censor a part of themselves in order to be accepted by others.

So then, is there a better way?

In parent support groups, parents of disabled children sometimes voice concerns about their kids preferring to interact only with adults, or to play by themselves for hours with a single object, instead of interacting with their peers. I tell these parents that traditional children’s play activities are often rife with accessibility barriers. Solitary activities, that a child invents and directs, are fully accessible by design. I remind parents that adult interaction partners tend to be more predictable and more accommodating of access needs than other young children. Thus, a disabled child’s “socially inappropriate” behaviors may be highly adaptive. Furthermore, for autistic people (of all ages), “special interests” may serve as a primal source of joy. It is fascinating that the same deep, passionate focus derided in the autism intervention world as “perseverative” or “obsessive” is rewarded in the academic world with grants and tenure. As Julia Bascom, executive director of the Autistic Self-Advocacy Network, writes (full post is linked at the end):

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

There are several things we can do to support disabled children’s social development. We can begin by understanding that social connection means something different to every individual, and instead of following a one-size-fits-all curriculum, we can try to understand and support a particular child’s social goals, knowing that these might change throughout the child’s life. We can follow the child’s lead in identifying playgroups and other natural friend-making opportunities based around their interests. We can work to ensure that play settings are fully accessible and that there is a choice of activities. We can introduce disabled children to a variety of role models, both disabled and not, who can demonstrate the social skills that really matter for healthy relationships: things like sharing, empathy, and trust. We can provide guidance beforehand, and feedback after, a challenging social situation. We can support the child’s natural social learning process so they can develop the connections that matter most to them, while accepting them for who they are.

As for me, my interest in relationships (both platonic and romantic) kicked up a few notches when I hit puberty. Today I am happily married, have a small group of great friends, have good relationships with my family, and feel comfortable teaching and leading others. What I learned about socialization didn’t come from blindness professionals or from a book. I did what the blindness professionals said I couldn’t do: I learned by observation. As a quiet person, I learned by listening to others interact, and adopting the social behaviors that fit me and my personality. At my core, I’m still an introvert, and I’m OK with that.

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