Category: Advocacy

Advocacy, Disability Community Leaders, disability etiquette, Solidarity2

The ABCs of Good Disability Awareness

Yesterday was World Sight day. Tuesday was World Mental Health Day. In the United States, this Sunday is White Cane Safety Day, while this entire month is National Disability Employment Awareness Month. And the disability-themed calendar entries aren’t just limited to October; check out this list of disability awareness days, weeks, and months

Most people enjoy participating in disability awareness campaigns. They have fun making signs, passing out pamphlets, or speaking to kids in schools. Most people seem to agree that disability awareness is a good goal to achieve.

But in disability communities, the term “awareness” raises some eyebrows. It’s not that we don’t support educating the public; far from it. It’s that the aim of “spreading awareness” has been used to back some truly reprehensible depictions of disability. For example, in 2009, the organization Autism Speaks promoted one of its awareness events with a video featuring images of children playing by themselves, alongside an ominous-sounding, disembodied voice saying “I am autism….I know where you live, and guess what, I live there too….I work faster than pediatric AIDS, cancer and diabetes combined…There is no cure for me…I am still winning, and you are scared, and you should be……” an “awareness-raising” depiction of autistic children as monsters, (with no mention of the adult self-advocates they might become). Another organization, the Foundation Fighting Blindness, posted a video last year that was titled, “What would you do if you couldn’t see your child?” The silent film featured images of children playing at the park, which became progressively blurrier to simulate loss of peripheral vision. While this film might have done a decent job of simulating peripheral vision loss, it failed to capture the ways in which blind parents interact with their kids outdoors, contributing to dangerous stereotypes that result in too many children being taken from their disabled parents.

Both of these attempts at disability awareness treated the disability as a one-dimensional enemy, completely ignoring the multidimensional lives of people affected. Fortunately, in response to mass protests, both videos were taken down by their creators (although the autism video is still in the Youtube archives). But it is clear that not all awareness is good awareness. We don’t want our disabilities regarded as enemies, nor do we just want people to know we exist. What we seek in an awareness-raising event is a real, tangible shift of public attitudes. We want people to come away from awareness events with a willingness to become our allies, an openness to consider us as equals, and a zeal to support changes that remove barriers keeping us from equal participation.
So, how do we construct awareness campaigns that effect real positive changes?

Early in my psychology studies, I learned about the “ABCs” of attitudes. Attitudes consist of affect (a fancy word for feelings), behavior, and cognition (a fancy word for thoughts or knowledge.). So, here are some ideas for the ABCs of an effective attitude change campaign. I welcome additional feedback about what has worked well in the comments.

Affect
Feelings are powerful motivators. Disability awareness messages often play on feelings, but too much of the time, they rely on scaring learners or making them feel sorry for people with particular disabilities. A good awareness campaign need not rely on fear or pity. Instead, invite people with disabilities to tell their stories and share themselves with the group. We tend to be more inclusive toward people we feel are similar to us, or when we identify emotionally with their experiences. So, let disabled guest speakers provide a window into their lives, their hobbies and interests, and their dreams. Share autobiographical accounts written by disabled people, or on social media, share blogs such as Autistic Hoya, Where’s Your Dog, or Claiming Crip.
Sometimes, good awareness means making people feel a little uncomfortable with the status quo. Encourage learners to critically examine their own knee-jerk reactions to disability and think about how they can modify their prejudices. Share accounts of discrimination and the prevalence of abuse, poverty, and other socially constructed injustices disproportionately affecting people with disabilities. Make learners a little angry about problems they have the power to solve collectively.

Behavior
The best awareness campaign does no real good unless it drives people to action. Once you’ve gotten learners emotionally invested in the problem, suggest concrete actions they can take to support people with disabilities. Examples of actions include:

  • Donating funds to a self-advocacy organization of disabled people;
  • Signing up for legislative alerts, and contacting legislators to urge action on disability rights laws;
  • Attending town hall meetings to advocate for improved public transportation in their town;
  • Identifying access barriers on their college campus or at local businesses, and reporting them to authorities;
  • Starting or joining a committee to promote inclusion at their place of worship;
  • If they are in a hiring position, making job applications accessible and advertising job openings in disability forums;
  • Making their photos and videos accessible on social media;
  • Consciously working to improve their one-on-one interactions with disabled people, ensuring they treat the person with dignity, as an ordinary other, and as an expert on their own needs. Learn more here

Cognition
Accurate information is an important part of awareness. Teaching about tools like the white cane can be very beneficial, especially when it opens up further dialogue. But any information presented must be accurate. I am continually shocked to see how many disability awareness activities happen without the leadership of disabled people. If you can’t find a disabled person or two to lead your event, at least find someone to fact-check your written materials or comment on your videos. Much better to get some critical feedback on a video before it’s released, than to release it and then deal with a ton of unexpected backlash from disability advocates. One place to find disabled individuals is on the Disability Wisdom Discussion Group
Accurate information might include education on the ways in which disabled people perform activities. It’s also OK to include information, from disabled people, on the challenges of disability. We know that having a disability isn’t all sunshine and rainbows, and presenting a balanced account is essential. Along with this, it’s important to respect the boundaries of our expert teachers with disabilities. Although many of us are willing to teach at a formal event, we may not be able or willing to teach when we’re busy shopping, for example, or we may wish not to talk about deeply emotional aspects of disability with people we don’t know well. A good awareness campaign may involve multiple expert teachers with different disability experiences, who are willing to participate in different ways. And, when you can, encourage ongoing contact between teachers and learners. After all, the need for good awareness doesn’t go away when a disability awareness month is over.

Advocacy, research

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.

For further updates, be sure to follow Disability Wisdom on Facebookand twitteror join the Disability Wisdom Discussion Group.
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 Arielle@disabilitywisdom.com to be subscribed by email.
Until next time,
Arielle Silverman, Ph.D.
Disability Wisdom Consulting
Phone: 240-630-1154
Email: Arielle@disabilitywisdom.com
Web: www.disabilitywisdom.com
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Advocacy, Disabled voices, Psychology, research, Solidarity

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.

Advocacy

Deaf patients struggle to get adequate interpreter services in ERs

For those of us with disabilities, access technology is key to our participation in life. It’s wonderful when I find public amenities that contain accessibility features. For example, I can now use talking machines to vote at the polls, and can get cash with the help of a talking ATM. These technologies give me the chance to vote and withdraw money privately, independently, and efficiently. Similarly, remote technology can allow a signing Deaf person to hold a conversation with a hearing person without having to bring an interpreter on-site, using the services of a remote sign language interpreter.

However, the technology is only as good as the humans operating it. One problem with access technology in public places is that because so few people use it, the people in charge of setting up the technology may not have practice setting it up when it is needed, or they may not notice maintenance problems in a timely fashion. Business owners and other managers of public accommodation may think they’ve covered their accessibility obligations by having the technology around, but may neglect the need for training and regular maintenance on the equipment. As a result, we may come to expect the technology, only to discover that it doesn’t work properly. There are other times when a piece of technology doesn’t meet our needs as well as a human assistant, for a variety of reasons.

When my voting machine or ATM doesn’t talk like it should, it’s an inconvenience. But imagine the stress involved in being a hospital patient and being unable to communicate with medical staff because the remote interpreting device isn’t working. As this article illustrates, failures in communication technology may explain, in part, the health disparities experienced by Deaf people and others with disabilities. It also illustrates that, sometimes, there is no substitute for the presence of face-to-face support.
Click here to read about some Deaf patients’ hospital experiences

ableism, Advocacy, PreEmployment Transition Services, Solidarity

Why Does Disability Surprise Us?

In 32 years of living with a visible disability, I’ve learned that my condition brings up many different emotions in people: fear, pity, and awe, to name a few. But there’s another common emotional reaction to disability that, I think, supports all the others: the reaction of surprise.

Sometimes people seem surprised to find us out on the streets. They’re shocked when we disclose our disability in the course of applying for a job, for school admission, or on an online dating site. We are sometimes socialized to pre-warn such people of our disability status before meeting them face-to-face, so we don’t just “surprise them” with the news. When I talk to parents whose infants are newly diagnosed with a disability, one of the most common things they say is “This wasn’t what we expected” or “we needed to change our expectations.”

But, why is this? When statistics show that 15-20% of human beings have a disability, why is encountering someone with a disability, either a stranger or a new addition to your family, so unexpected and surprising?

I don’t know the answer to this. I suspect that, at least in part, our surprise is a consequence of our denial. In some ways, we may be either hard-wired or taught to fear becoming disabled in much the same way we fear our own death. And, if we are motivated to deny the possibility that we might become disabled someday, we may also extend that thinking to the belief that disability in others isn’t all that common. When we encounter a person with a disability, we may be motivated to see that person as an unusual oddity rather than an ordinary human being. This way of thinking makes it more difficult for us to acknowledge the fact that or our own children, employees, friends or romantic partners could be disabled.

As a consequence of this collective surprise, when a disabled person does arrive on the scene, we may end up scrambling and fumbling to accommodate that person. Whereas, if we expected disability from the outset, we could build our systems from the ground up so that they are fully accessible to people of all abilities. For example, all too often employers find themselves having to figure out how to make their company’s computer hardware and software accessible when a blind person is hired, rather than simply buying accessible software ahead of time in the event that a blind employee (or, really, anyone who might not work well with graphics-based technology) is hired in the future.

So, I challenge you not to be surprised by disability. Instead, expect it. Expect that 15-20% of the people you will meet will have some physical or mental difference that affects their ability to access one or more environments. Expect that the people with whom you interact may have differing needs or strengths. Don’t be surprised if someone in your workplace, school, family, social circle, or anywhere else has a disability, perhaps one you didn’t notice at first. Their revelation doesn’t affect their belonging in that social space. It doesn’t mean that their successes are somehow inspiring or unusual. It just means that they may do some things in a different way. Perhaps once we start to think of disability as regular and mundane, we may find it easier to accept those who have disabilities as ordinary people.