Disability Wisdom Fall 2017 Update!

It’s been a little over six months since this website was launched. When the website was launched, I started sending out an E-newsletter to my professional and personal contacts every three months describing what Disability Wisdom has been up to. The newsletter isn’t a full listing of projects that I work on with Disability Wisdom, but just highlights a few notable research, training and knowledge translation projects. I try to share a few free publications as well.

Below is the Fall 2017 Disability Wisdom newsletter. My apologies to those of you who have already gotten this in your inbox, but I wanted to make it available to other blog readers who haven’t yet subscribed, and those of you who are reading my website for the first time. Please share a link to this post, or copies of the free downloadable publications, with anyone who might be interested.
Email meif you’d like to receive the quarterly newsletters in your inbox.

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Enjoy, and thanks for reading!

Dear friends and colleagues:
Thank you for supporting Disability Wisdom Consulting. It’s been a pleasure to spend my days learning and teaching about the disability experience, and getting to work with so many dynamic people who are dedicated to making our world a more inclusive place. Below are some quick updates on projects I’ve been working on during the last three months, along with two resources you may wish to share with your networks.

Research Highlights
Exploring Social Assistive Technology Preferences:
This year, I’ve had the pleasure of working with the Center for Cognitive Ubiquitous Computing(CUbiC) at Arizona State University. CUbiC is developing haptic aids that could help convey information in an accessible way to users who are blind or visually impaired, including information about their own nonverbal signals and mannerisms during a conversation. Working with CUbiC, I surveyed 77 adults who have been blind since birth to find out what strengths and challenges they experience with nonverbal communication, as well as their feelings about using a haptic aid for social interaction. We hope to publish the findings soon, and will share a summary with you at that time. We also hope to get additional feedback from the 300 individuals who agreed to participate in future studies with us.
Are you interested in using survey tools to get input from people with disabilities? I can work with you to design, program, launch and analyze surveys customized to your needs and goals. Contact me for more information or to set up a meeting!

Training Highlights
Top Ten Tips for Inclusion:
I started out as an inclusion trainer when I was invited to develop some content for the Union for Reform Judaism’s Disabilities Inclusion Learning Centerthree years ago. Over the past few months, I’ve had a wonderful opportunity to continue working in the Jewish community with URJ and with Hillel International,the “foundation for Jewish campus life.” Hillel recently asked me to build a “top ten list” of inclusion tips that any organization can implement to promote inclusion into all aspects of its work. Here is the Top Ten sheet that we developed. The tips begin by addressing person-to-person interactions, and then progress to the organizational level. On the second page of this double-sided handout, you will find links to some of the largest disability advocacy and support organizations in the United States, which can help answer questions about disability-specific issues. Feel free to share the attached resource broadly.
Top Ten Inclusion Tips

Knowledge Translation Highlights
New Fact Sheet: How to Make Healthcare Accessible for All
I wrote this fact sheet for the Rehabilitation Research and Training Center on Aging with a Physical Disability at the University of Washington. Written for healthcare providers, it highlights the most common access barriers that disabled patients may face in the healthcare setting, and practical ways to remove them. Read the fact sheet here:
How to Make Healthcare Accessible for All

Website and Blog Highlights
Check out the Disability Wisdom Logo!
Disability Wisdom has a new logo! You can see it in the banner on this blog.
(Picture description: stylized picture of a head with feathers or spikes (depending on your interpretation) extending in all directions in a rainbow color pattern, with the words “Disability Wisdom Consulting” below the head, and the braille letters “dw” at the bottom.)

Blog Update:
Check out some recent blog posts: Learn how Disability Wisdom got its name, read about controversies around “curing” disabilityand links to some excellent articles on disability issues.
Want to subscribe to the blog? Click the “follow” icon in the lower right of the screen (link labeled “follow” for screen reader users), or email meat to be subscribed by email.
Until next time,
Arielle Silverman, Ph.D.
Disability Wisdom Consulting
Phone: 240-630-1154

ADA National Network Offers Support and Resources for Accessibility

Today I’m at the annual conference for the Mid-Atlantic ADA Center
which is one of ten regional centers in the ADA National Network
So, for this blog post, I just want to point interested readers to the ADA National Network as a resource for information and training about the ADA. The ADA National Network offers technical assistance to employers, business owners, and others serving the public about the provisions of the ADA and how to maximize accessibility of facilities and services.
In particular, the ADA National Network has a helpful fact sheet page
with easy-to-read, printable fact sheets in English and Spanish on a wide variety of accessibility topics. Please share these important resources in your communities.

Producing Positive Disability Stories

I’m on vacation with my family this week! Instead of preparing an original post, I wanted to share an excellent article from a fellow inclusion consultant, Haben Girma
Haben was the first deaf-blind person to graduate from Harvard Law School, and was recognized as a White House Champion of Change by President Obama. A talented storyteller herself, she teaches people to frame difference as an asset. In an age where disability is often featured in print and online media, her practical tips for producing positive disability stories are worth careful consideration.
Producing Positive Disability Stories: A Brief Guide

I’m A Fighter…But Not How You Think

Fighters. Warriors. Brave. Courageous. Tough. Heroes. Beating the odds. Overcoming obstacles every day.

These are terms frequently ascribed to people with disabilities, sometimes by people who don’t know us at all. Some disability advocates have rejected the trope of the disabled warrior or hero as a form of inspiration porn.While I agree with this sentiment, I also think it’s interesting to dig a little deeper into the concept of the disabled fighter. Is there any grain of truth there; are we fighters?

On the surface, the thought of describing me as a “warrior” makes me laugh. After all, I was the kid who insisted that I “like everybody.” The kid reading a history book and wondering why the white colonists and the Native Americans couldn’t just sign an agreement to split land down the middle, or live together in peace on shared land. I’ve always held peacemaking as a moral priority, and even now with the wisdom of adulthood, I think of most organized warfare like an ill-conceived gamble where the house almost always wins.

Yet I was also the kid who would debate with anyone around over some arbitrary idea until they either admitted I was right, or got me in trouble. (Including a lengthy debate with my sister regarding whether or not it is really possible to “like everybody”.) I was often the first to speak up when I, or someone I cared about, was treated unfairly. And my lifelong role models are nonviolent protesters, like Martin Luther King Jr., and innovators, like Louis Braille.

The stereotype of the disabled warrior often assumes that the disabled person is fighting the disability itself, or obstacles closely related to the disability. We are seen as confronting ordinary circumstances with extraordinary courage. This depiction is incongruent with many of our experiences. Some of us feel overwhelmed by the obstacles of disability, while others of us don’t see them as obstacles at all, and thus don’t see ourselves as bravely overcoming anything. Further, for those of us who feel that our disability is integral to who we are, the disabled-warrior depiction sets up the sense that we are fighting against a part of ourselves,a kind of unhealthy internal conflict. Conversely, accepting negative events or circumstances is key in several evidence-based approaches to mental health, such as mindfulness and acceptance and commitment therapy.

The tension between “fighting” and accepting disability was highlighted when I conducted focus groups with middle-aged adults who have multiple sclerosis (MS) a few years ago. In the focus groups, we asked the participants what “bouncing back” or being resilient means to them. Many of their answers evoked images of accepting, rather than fighting, the condition. One participant described “dancing with” MS. Another said, “It’s like a tire, I’m gonna roll with [MS].” The participants described the value of accepting the condition’s presence, planning ahead, and making adjustments (such as cutting back on work, or moving to a more accessible home). However, these participants also described efforts to stay engaged in life despite limitations. One woman told us she competed in a triathlon while she was still physically able. Another said, “You know what? We only got one life. We’re only here one time. We’ve got to make the best of it, right?” The participants told us of their efforts to continue hobbies, to volunteer, to spend time with grandchildren. They made needed accommodations for their disability but refused to relinquish activities that gave their lives meaning.

In another study, people with chronic pain answered questions about their level of “pain acceptance.” This construct was defined as accepting the experience of pain while also continuing to do things in spite of pain. Participants scored higher in pain acceptance if they agreed with statements such as “I am getting on with the business of living regardless of my pain.” People who scored higher in pain acceptance showed improvements in mood and sleep quality over a three-year period, and although many of them still had significant pain three years later, they reported that the pain interfered less with their daily activities.

Healthy coping with disability involves acceptance, but acceptance does not mean surrender. We can incorporate the disability as a part of ourselves that we tolerate or sometimes even appreciate. But we also engage in an active process of doing what we enjoy, despite limitations. In the process, we fight our internalized doubts and fears. We also fight the barriers, big and small, that others might place before us. Many of us fight for an equal education, full consideration for employment, or the right to participate in fun activities. Contrary to the individualism that the disabled-warrior stereotype conjures, our most successful fighting is done collectively-hence why disabled activists have been dubbed the “hidden army.”

The popular Serenity Prayer reads, “Grant me the serenity to accept the things I cannot change, courage to change the things that I can, and wisdom to know the difference.” Perhaps this statement best illustrates the dance between accepting and fighting. As disabled people, we often can’t change the medical facts of our disabilities, so we find serenity when we learn to accept them. But for the things we can change, the social and environmental oppression, we thrive when we merge our collective courage toward challenging the status quo. And, all of us are on a continuing journey of learning “the difference,” knowing when to accept, and when to fight.

Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help

In the 1950’s, psychologist Gordon Allport wrote about intergroup contact as a remedy for prejudice. Allport postulated that bringing different groups of people together is necessary, but not sufficient, to improve intergroup relations. In order to meaningfully reduce prejudice, Allport emphasized, contact between people from different groups must be one-on-one, cooperative, condoned by authority figures, and members of the two groups must have equal status. Allport’s “contact hypothesis” has been supported by evidence in the lab, as well as through natural experiments like the racial desegregation of schools in the American South.
Beginning in the 1970’s, many children with disabilities are attending their neighborhood schools with nondisabled peers. It is often thought that such integration will reduce ableism in our society. Teachers and principals may set up “buddy” programs or “friendship circles” to encourage contact between disabled and nondisabled students, in the name of reducing ableism. But, some school inclusion programs fail one of Allport’s critical tests: they place the nondisabled student in a helper role, and the disabled student in a lower-status “helpee” role.
As the below article points out, the status imbalance that some schools unwittingly encourage may explain why many mainstreamed disabled kids “may have successful buddy systems during school hours, and still be isolated after three o’clock.” In other words, relationships based on helping alone don’t confer the benefits of real, reciprocal friendships. Instead of breaking down barriers, they can serve to reinforce existing stereotypes and hierarchies.
Instead, the authors suggest fostering the natural development of friendships, teaching the nondisabled kids to listen rather than jumping in to help, and appealing to children’s natural sense of justice. This article is a bit long, but I encourage readers to pay attention to the practical suggestions presented at the end. The need for real inclusion is stronger now than ever. As the authors state:

We must guard against merely creating another generation of “professionals” and “clients”, with the former group seen as perpetually competent, and the latter, perpetually needy.

Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help