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Solace in Solidarity: Disability Friendship Networks Buffer Well-Being

Friendships enrich our lives. Friends laugh with us, cry with us, give us information and advice, and remind us that we belong. But beyond these benefits of friendship, for those of us with disabilities, there can be something special about having friends with similar disabilities. In this blog post, I want to describe my newly published research paper
about the benefits of disability friendship.

Many of the challenges we experience as disabled people, ultimately, stem from our minority status. Unlike some other minorities, though, we are often separated from others who are like us. Disability is often a horizontal identity that we don’t share with parents, and many times, one may be the only person with a particular disability in one’s school, workplace, or town. With this isolation, we might find ourselves taking instances of discrimination personally, or buying in to misconceptions about our own abilities. Although there are obvious advantages of being included in the nondisabled mainstream, we sometimes seek out friends who share our disability experience. In this research, my colleagues and I looked at the connections between having friends with disabilities and overall happiness.

Like many good research projects, this one came about by accident. When I was in grad school, I conducted an exploratory study with about 500 blind adults to find out what factors were associated with higher well-being. One question on the survey, that we tossed in right at the end, asked “about how many of your close friends are blind?” We found that on almost every measure of well-being, the respondents who said that some or many of their friends were also blind scored higher than those who said they had no, or only a few, blind friends. This was interesting, but we wanted to rule out the possibility that those respondents with more blind friends just had more friends in general. So we followed up with 71 of our respondents and asked them to count up how many blind and sighted close friends they had. They then filled out the Satisfaction with Life Scale,
a well-validated short measure of how satisfied they were with their lives overall. We found that regardless of how many sighted friends the respondents had, those with more blind friends had higher satisfaction with life.

When I started my postdoc at the University of Washington, I continued this research by asking people with various physical disabilities how many friends with disabilities they had, and giving them a similar measure of their overall quality of life. We had about 1,500 adults with various physical disabilities complete the survey. This sample was more diverse than the blind sample. We found that more than half of the respondents said they didn’t have any close friends with their particular disability condition, and almost half had no close friends with any physical disability. As in the first study, we found a link between friendships and quality of life, with respondents who had friends with disabilities reporting higher quality of life than respondents with no disabled friends. We also found that among the respondents with no disabled friends, there was a strong link between having more severe physical disability and lower quality of life, but for respondents with disabled friends, that link was weaker.

It’s clear that having disabled friends to validate one’s experiences, taking “solace in solidarity”, can be a powerful emotional buffer against the daily microaggressions and more blatant discrimination we encounter in the world. There are also tremendous practical benefits in terms of exchanging information. I regularly trade info with my blind friends about everything from finding accessible computer software, to nonvisual cooking techniques, to learning the DC subway system. In groups run by disabled people, one will likely encounter less accessibility barriers than in the same type of group without disabled leadership. For those of us with new disabilities, friends living with the same disability can provide hope, act as role models, and help ward off self-pity. It is through a combination of inclusion in the nondisabled world, and connection with disabled friends, that one can find a strong social balance.

Do you, or someone you know, want to meet people with a particular disability?
Check out this list of national disability organizations
to see if there is a local group in your area, or an online discussion group. As part of Disability Wisdom’s work, I also host a cross-disability Facebook group
where we discuss shared disability experiences. Stop on by!

**Email meif you want to learn more about the research, or for a full copy of the article.

disability etiquette, Solidarity2

STOP. ASK. LISTEN.

When I was a child, probably around the time I started elementary school, I was taught a few basic lessons about how to get along with my fellow humans. My family and school were fairly typical of my culture, so I believe that most of my peers were taught similar things. These lessons included:

Keep your hands to yourself. In other words, don’t touch people without a good reason, and without their permission.
If somebody touches you and it doesn’t feel good, tell them to stop. If they won’t stop, tell Mom or Dad.
No means no. If somebody says “no” or “stop” to you, about literally anything, you must stop. It doesn’t matter if that person is older or younger than you, and it doesn’t matter if they’re saying no to a tickle fight, playing your favorite game, or sharing personal information, you must listen up.
Don’t tape-record people without asking if it’s OK first. If you tape-record somebody without permission and they find out, you could get in really big trouble.

**Note that like many blind kids in the ‘90’s, I loved to carry around my little micro cassette recorder taping my conversations. When I got older and stopped doing that, I learned that this rule also applies to photos and videos.**

So, these were the childhood lessons on which most of us were socialized. We learned about the importance of boundaries, respect, and consent for ourselves and for others. Obeying these rules becomes so ingrained we rarely think about it.

And yet, I have noticed that for many of us with visible disabilities, these rules get broken on a routine basis. Strangers often seem to have no qualms about touching, grabbing, pulling or steering our bodies or our mobility aids. Sometimes this is done in an attempt to help us with real or imagined needs related to our disabilities. Other times, the uninvited touching is used as a means of communication-as with the kindly meant, but patronizing, shoulder pat. Often there is no ill intent behind this behavior, but it is easy to imagine why an unexpected pull on one’s arm, briefcase, guide dog harness, or wheelchair might not “feel good”. Outside an intimate relationship, these touches often feel disorienting, threatening, even painful. However, if we assert boundaries, either through our words (“please let go of me”) or through our body language (pulling away or flinching), our “no” signal may be met with resistance or even anger. Somehow, if we’re disabled, the rules don’t apply.

And, as for the rule about recording people without permission? Recently there have been several occasions in which bystanders photographed interactions between disabled and nondisabled people and posted the photos on social media as a form ofinspiration porn. For example, in a recent incident, a restaurant server assisted a disabled customer with eating at her request. A bystander snapped a picture of the pair and posted it online as a way to recognize the server’s good deed, without consulting with either party. The post went viral. This individual kept the picture online, even after admitting that she just “didn’t think about” getting consent first, and even after dozens of other disabled individuals expressed concern about the woman’s privacy. This is not an isolated incident, but part of a pattern.

Boundaries are integral to our well-being. On the most basic level, our physical and sexual boundaries protect us from bodily harm. We put boundaries around our property to safeguard it from theft. And, on the highest level, boundaries define our identity, give us control over our public selves, and afford us a sense of human dignity. Consent is the process by which we open or close those boundaries at will. We choose who to let in, when to let them in, and how far to let them go. People of all ages and abilities have a right to basic consent. Even the newborn baby who accepts the nipple when he is hungry, or pulls away when he is full, is exercising a primal form of consent. Respecting each other’s boundaries and consent signals is essential for peace and harmony within a society.

But, too often, consent gets forgotten when disabilities are involved. Sometimes people get caught up in their own rush of emotions, their desire to help, or the warm glow of inspiration, and in their emotional chaos they just forget about consent. Other times, the motivation is much less kind. Disabled children and adults worldwide have much higher abuse rates than nondisabled people,and a hallmark of abuse is a breach of basic consent.

Facing someone with a disability can be emotionally overwhelming. Sometimes when we are emotionally overwhelmed, we can remember only the simplest rules of conduct. Around the time that I learned about boundaries and consent, I also learned about fire safety. “Stop, drop, and roll” is something I will remember even if my clothes are on fire and I’m freaking out.

So, I want to introduce a simple maxim you can keep in mind while interacting with someone who is disabled, if you are feeling unsure what to do.

Stop. Ask. Listen.

STOP. Instead of immediately jumping in to help someone, or to share their inspiring story, stop, take a breath, and let your emotions settle.
ASK. This is like ringing your friend’s doorbell instead of breaking down the door. Questions like “would you like my help?” or, even better, “how can I help you?” “Is it OK if I pet your service dog?” “I think it’s really sweet seeing you play with your daughter. Would it be OK if I take a photo?” All of these open up an inquiry about their boundaries.
LISTEN. This is the most important part. If you ring your friend’s doorbell and she doesn’t answer, you wouldn’t break down the door. In the same way, if the person says no to any of your requests, it’s time to back away. Is the person nonverbal or doesn’t speak your language? Watch their body language instead. Do they welcome your approach or do they recoil? Do they look happy, or pained? If you aren’t sure, try to find out what communication they use. Above all, trust that any person you meet gets the final say-so over their own boundaries.

disability etiquette, Disability history

On people with Disabilities, Also Known As Disabled People

Since I’m a disability training consultant, I spend some time reading etiquette tips for interacting with people who have disabilities. One of the strongest, most consistent mandates I see is regarding “person-first language”. All the books and tip sheets urge us to refer to people with disabilities as “people first” by using phrases like “person with autism” or “person with a disability” rather than “autistic people” or “disabled people.” This mandate has moved into the academic realm as well, with journal editors and grantmakers requiring person-first references to disability in academic writing. I’ve even known people who were corrected when they referred to *themselves* as disabled people.

Because disability is such a diverse, nuanced experience, I’ve always found the rigidity around disability language to be a little frustrating. The person-first mandate also contradicts the way I’ve always talked about my own disability. Without pause, I’ve always referred to myself and others like me as “blind people” and this phrase never struck me as offensive. So, I was interested to read this recent American Psychologist articleabout how disability language has changed over time.

Person-first disability language became popularized in the 1980’s and 1990’s, around the time of the Americans with Disabilities Act (ADA)’s passage. It came in reaction to earlier, medicalized disability language that defined people exclusively by their impairments. Terms like “the Down’s kid” or “those schizophrenics on the fourth floor” dehumanized people by labeling them as nothing more than their impairments and discounting differences between people with the same impairment. In this way, person-first language emphasizes each person’s humanity and individuality.

However, in recent years some members of the disability community have challenged the exclusive use of person-first language. Their argument has two main thrusts. First, we don’t use person-first language to describe any other group of people in English. We don’t say, “the person with femaleness” or “people who are Asian”. We certainly don’t say “people who are beautiful”; instead we are happy to call them “beautiful people.” In this way, person-first disability language sounds unusual and, paradoxically, brings more mental attention to the disability. The phrasing itself can also be awkward, especially in writing.

The second issue is that many people think of their disabilities as positive parts of who they are. Thus, they would not want to be separated from their disability identity in language. Instead, they prefer “identity-first” constructions that highlight their membership in a particular disability group, in the same way we use “identity-first” phrasing to describe someone’s race, gender, or beauty. This thinking is especially strong among some disability groups, such as blind people, Deaf people, and autistic people.

So then, what’s the bottom line? What language should we be using?

The short answer is “both.” Using both types of language respects both viewpoints on the issue. Using both constructions also breaks down the rigidity that often accompanies this discussion. I will use both types of language on this blog and in my training materials to offer respect to both preferences.

In addition, it is worth noting that people with disabilities, also known as disabled people, must be the ones leading these language discussions. We should respect their preferences on how they speak about themselves and how they wish to be described verbally and in writing. All too often, people without disabilities, aka nondisabled people, have been the ones promoting a rigid language preference.

Last year, I gave an invited talk at an occupational therapy conference about some research I had done. A colleague urged me to use person-first language throughout my talk. Out of curiosity, I asked some friends on Facebook what type of language they preferred to use, and mentioned that I had been mandated to use person-first language with the occupational therapists. A friend of mine, who happens to be a person without disabilities who teaches kids who are blind or visually impaired (also known as, a nondisabled teacher of blind students), had an interesting idea. She advised me to call my audience “therapists of occupation.” She further advised that since I was not a member of that group, I obviously had the authority to decide what these individuals should be called. Her facetious response illustrates the absurdity of telling others what to call themselves.

If you are in doubt about what to call a particular individual, person-first language is a safe initial bet. But, even better is to ask the individual. If you are writing or speaking about a particular disability group, read their literature, and find out what language they use. Most of all, recognize that language is an ever-changing reflection of the way groups view themselves, and are viewed by others.

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Solidarity2

Don’t “Dis” Us (Reblog)

Disability is a complex story that must be told through multiple voices. From time to time I will feature another disability insider’s words on this blog to offer a new perspective.

Today, I am sharing a blog post by Qudsiya Naqui. Qudsiya Naqui is a lawyer based in Washington DC, focusing on immigration law and policy. She is also author of the blog otherwiseenabled, where she explores and challenges the concept of “disability.” In this post, she explores how language can unintentionally divide us rather than unifying us. Her words underscore the Disability Wisdom idea that disability rights (and immigrant rights, and gender and race equality) are human rights.

Don’t “Dis” Us

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ableism, research

She Swings! She Hits! She’s Great! She’s…Benched?

“You’re so brave for crossing that street all by yourself!”
“You handle those stairs better than I do!”
“You’re such an inspiration… Sometimes I have trouble motivating myself to go to the gym. But when I see you there, I know I don’t have an excuse.”

These are all real things I have been told, usually by strangers or casual acquaintances. And it’s not limited to one-on-one conversations either: Increasingly, social media is being inundated with “inspiring” images of disabled people going about their normal business, flanked by captions like “What’s your excuse?” or “The only disability is a bad attitude”. The late disability activist Stella Young unaffectionately called these portrayals “inspiration porn”, highlighting the fact that they are often, intentionally or not, created by nondisabled people to make other nondisabled people feel good.

On the surface, the comments and social media memes seem positive. Everyone enjoys a compliment now and then. And, if my actions can inspire another person to improve their life, what’s wrong with that?

Disabled people have found several problems with inspiration porn. It often objectifies the disabled person; it obscures real problems of disability discrimination; it accentuates the “otherness” of disabled people; it undermines disability identity. I agree with all those critiques, but I also want to offer another reason why inspiration porn bothers me, based on social psychology. I call this the “shifting standards” critique.

To illustrate, let’s think about children for a minute. We often get really excited about children’s accomplishments. We might marvel that the infant who breaks 20 pounds is “such a big boy!” or the 2-year-old who can recite the ABC song is “such a smart girl!” Now, when we consider the full spectrum of humanity, a 20-pound human is not all that big, and knowing the ABC song is definitely not the pinnacle of human intelligence. But, when we’re thinking about little kids, we naturally shift our standards. We know that little kids have not yet reached their physical or mental potential. So, we compare their achievements to those of other kids their age, or perhaps to where they were six months ago. There’s no real harm in this, and in fact, exaggerated praise may be a young child’s first reward for practicing a new skill.

But how would it feel, as a grown adult, to be praised for doing something as ordinary as filling out a deposit slip at the bank or parking your car? What if the stranger next to you at the gym, visibly lifting more or running faster than you are, kept going on about how strong you are? Might you wonder if your actions are being viewed through the lens of a shifting standard?

Social psychologist Monica Biernat described “shifting standards” as a discrepancy in social judgment. With shifting standards, we may judge members of some social groups positively on “subjective” metrics-like rating women higher than men on an athleticism scale of 1 to 10-but at the same time, we rate those group members lower on “objective” metrics-like believing that women score lower batting averages than men. What matters most about this, though, is that shifting standards can disguise discrimination against members of some social groups.

In a provocative studysharing the title of this blog post, Biernat and her colleague Theresa Vescio had college students pretend to be managers of a coed softball team. They were given pictures of 18 people, 9 men and 9 women. Their job was to assign 13 of the 18 people to be on their fantasy softball team, and then to pick 10 out of the 13 people to be in the starting lineup and assign batting and fielding positions to each player. The other three players on the team were “benched”. Then, the students looked at each picture again and were asked to imagine how they would respond, as managers, if the player hit a single (i.e., would they do nothing, or would they praise and congratulate the player)?

Consistently, the students (both men and women) chose more men than women to be on their fantasy team, and the women they chose were more likely to be benched. They also put men in more prestigious positions on the field than women. However, along with this, they said they would publicly praise and congratulate more female than male players for hitting a single.

So, what does all this have to do with inspiration porn?

As disabled people, we get benched all the time. Sometimes quite literally (a particular stretch of fourth-grade gym class comes to mind). Other times, the benching occurs in the form of job rejections, housing denials, being passed up for dates, or access refusals. And sometimes we are told, “You’re so independent!…But we think you’d be too much of a liability for this job” or “You’re so pretty…You’re like a sister to me”.

In other words, when I am called inspiring or amazing for doing ordinary things, it makes me question the standards used. Am I being measured against the same standards as my peers? Or am I being praised as amazing or inspiring compared with some stereotypic idea of what blind or disabled people are expected to do? The latter possibility suggests that the person praising me could pbench me, or pass me up for an opportunity that really matters. Ironically, while these “compliments” are often meant to raise disabled people up, their implication of shifting standards may unintentionally drag us down.

So, next time you are feeling impressed or inspired by a disabled person, ask yourself a few questions. First, would the same action still be inspiring if this person were nondisabled? And second, is what this person is doing impressive enough that you’d pay your own money for it? For example, if you’re inspired by watching a disabled person walking their dog in the park, would you feel comfortable hiring them to pet-sit for you?

If your answer to either question is “yes”, great! But if your honest answer to both questions is “no”, then you may want to re-examine your standards. Get to know us, read about us, and learn the adapted methods we use to achieve equal results. Perhaps by meeting and interacting with disabled people, you might be surprised by how ordinary and unremarkable life can be for us.

And, to help spread more balanced information about disabilities, check out these tips for creating anti-inspiration porn
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