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You Ask, I Answer: What’s the deaf experience like? [Repost]

“In writing this, what did strike me  was not the nitty-gritty of daily accommodation or the nature of my own deaf experience; it was simply self sufficiency, an awareness of what I need. I think this is a very normal experience for anyone who has a disability – we live in a world that is currently built for people other than us. To function and live our lives in this world. we must develop rather astonishing degrees of awareness about our selves and our spaces.”

This week on the Weekly Wisdom blog, I want to share another great post from one of my favorite bloggers, Meriah Nichols. Meriah wrote this post to answer some questions from a blind person about D/deafness in everyday life. From accessible alarms for D/deaf people, to learning how D/deaf people order food in restaurants and know when their babies are crying, she gives us a glimpse into the diversity of alternative techniques allowing D/deaf people to participate in all facets of life.

You Ask, I Answer: What’s the deaf experience like?

When Good Science Meets Bad Values: The Case of Applied Behavior Analysis (ABA)

“ABA is not ‘dog training for children.’ I would never treat a dog that way.”

“Dog trainers don’t talk about systematically altering behaviour as if the dog weren’t a thinking, feeling, sentient being.”

“A good dog trainer doesn’t extinguish behaviours which improve the dog’s mental health and happiness. But an ABA practitioner may not think twice before doing this to a human child.”

“Dog trainers understand that dogs need to chew and bark and dig, but ABA therapists don’t understand that autistic children need to repeat words and sentences, flap their hands, and sit quietly rocking in a corner when things get too much.”

“Now understand that sessions like this are not a couple of hours a week. ABA therapists recommend that small children between 2 and 5 go through 40 hours a week of this type of learning.”

“I know that if I ask someone if they think it is abusive to remove a child’s only way of contacting their parents, or to ignore a child in distress, or to force a child into a situation that they find uncomfortable/painful, or refuse to help a child when they are suffering and overwhelmed, they will say yes. As long as I don’t mention that the child is autistic, anyway.”

“They don’t think about how this person will learn to stand up for themselves or advocate for their needs when they were systematically trained in preschool never to disagree, speak up, or disobey.”

In autistic self-advocacy circles, April is Autism Acceptance Month. It’s a month to celebrate neurodiversity, in stark contrast to the grim portrayals of autism that characterize “Autism Awareness” and the annual “Light It Up Blue” campaign.

So, on this first Friday of Autism Acceptance Month, I want to highlight autistic views on the most popular “evidence-based” therapy for autistic children in the United States and Canada, Applied Behavior Analysis (ABA). Simply put, pure ABA uses external reinforcement or punishment to change outward behavior, and it is often used to make autistic people act in more neurotypical ways. I would urge readers who have any connection with an autistic person to read these two articles written by autistic people. The first, written by an autistic dog trainer, examines the spurious comparison often made between ABA and dog training. Her argument is that the discipline of dog training is more concerned about the inner well-being of its subjects than is the discipline of ABA. She cites the codes of ethics in both disciplines, as well as common practices in both dog training and ABA, to support her assertion. The second article includes video clips from real ABA interventions that, on the surface, may seem harmless or even positive (e.g., teaching a student to tolerate a grocery-store environment). However, the author emphasizes the coercive nature of the interactions between therapist and child, and the emphasis on meeting the therapist’s demands over meeting the needs of the child.

ABA may be “evidence-based” in that it leads to outcomes desired by its practitioners. But, autistic voices call into question whether or not the outcomes of ABA are truly positive from the perspective of its recipients. Any intervention, including ABA, must be evaluated according to the benchmarks set by the population who has the most to gain-or lose-from it. It is time to center autistic people in the evaluation of autism therapies, including ABA.

Is ABA Really Dog Training for Children? A Professional Dog Trainer Weighs In

Invisible Abuse: ABA and the Things Only Autistic People Can See

Sign, Sign, Everywhere a Sign!

The Colorado Center for the Blind (CCB) is a training center where blind students learn, among other things, how to travel in a city. In 1996, signs saying “blind crossing” began mysteriously popping up at intersections near the center’s instructional buildings and the apartments where the center students lived. Eventually, it was revealed that these signs had appeared at the request of a concerned citizen, Ms. Sonja Guenther, who had no connection with the CCB. She was anxious about the safety of the many blind students she saw crossing streets on their way to the center.

I grew up at the end of a cul-de-sac where a car passed my house about once every ten minutes. So, I didn’t find out until a few years ago that disability street signs are a thing. While “child at play” signs have been available since the 1940s, now there is a demand for signs saying things like “deaf child,” “blind child area,” or “autistic child.” Parents either request the signs from their city or town, or they make their own. And as revealed by what happened at CCB, signs can be requested for the benefit of adults, too.

Before I explain why I’m not a fan of these signs, I want to acknowledge the very real concern that motivates their use. Traffic is dangerous. I can’t begin to imagine the fear that parents must experience on the idea of their child being struck by a car. Especially if the child has shown risky behavior, such as running out into the street, that may or may not be influenced by a disability. Ultimately, the sign is one of many tools available to a disabled person and their family. I do hope anyone considering these signs will give some thought to the arguments below, and make an informed decision, ideally with the involvement of the disabled person connected to the sign.

First, disability signs reinforce stereotypes. They effectively shout to passersby: “Disabled person here, they’re different, treat them with care.” They imply that the disabled pedestrian cannot look out for their own best interest. People with sensory impairments do miss some traffic-related information. However, a blind or deaf pedestrian is not like a nondisabled pedestrian with a blindfold or earplugs on. Rather, we substitute the missing information with different, equally valid information. I’m not convinced that blind people, as a rule, are at greater risk of collision with a car. The reason I say that is because I have a lot of experience walking with both blind and sighted people. Almost all of the risky pedestrian choices I have witnessed, such as crossing in the middle of a block or against the light, were choices made by sighted people.

But, disability signs don’t just reinforce stereotypes. They also rely on stereotypes in order to have any chance of efficacy. If members of the public truly understood that disabled people are a cross-section of society, and that not all people with particular disabilities need to be treated with care, they would not change their behavior in response to disability signs. These signs only work if drivers think that disabled people need special care. So, users of the signs are capitalizing on disability stereotypes to keep disabled people safe.

Which leads me to my next point: These signs don’t advise drivers on how, exactly, to accommodate a particular disability. It’s assumed that drivers will know what to do upon learning that a blind, deaf, or autistic person *might* be in the area. We know that most nondisabled people have no real idea how to help us. The signs don’t give enough information to truly educate drivers.

For example, what the heck is a “blind crossing?” Is it an intersection where one corner is hidden from view? Is it a tangle between window blinds? Is it a crossing through a dark tunnel?

I’m poking a little fun, but disability stereotypes are no laughing matter. The idea that disabled people are less safe is the reason why families of disabled parents are still torn apart, why disabled people are still routinely denied jobs, why some disabled people end up in institutions against their will. Using signs to advertise these stereotypes is reinforcing discrimination. The signs also do nothing to educate drivers on how a disabled person might interact differently with traffic.

Besides strengthening stereotypes, disability signs can stigmatize the very individuals they are meant to protect. In an article on the Hands and Voices website, a deaf woman was interviewed on the matter. “She hated the sign while she was growing up. It was more than embarrassing; it was like a scarlet letter. She was mortified to have people stop by and see this label posted outside her house.”

But, parents have argued to me, this is about safety. Safety outweighs stigma concerns. After all, disabled people use plenty of devices or techniques that make us stand out, yet they have obvious benefits that outweigh the downside of being labeled as disabled. And, I agree that if we are truly considering a life-or-death danger, preservation of life should trump all. So, let’s look at the potential benefit of these signs.

There is very little peer-reviewed research on how signs impact driver behavior. However, organizations like the Federal Highway Administration (FHWA) and the Institute of Traffic Engineers (ITE) discourage their use. The latest manual of the FHWA advises that “warning signs should be kept to a minimum as the unnecessary use of warning signs tends to breed disrespect for all signs.” A common concern is that when signs frequently appear in the absence of an actual child, disabled person, etc. drivers will learn to disregard them. They can breed a false sense of security, as evidenced by the fact that the types of drivers who tend to speed through residential areas also tend to be the types who will ignore signs.

It was for all these reasons that on May 18, 1996, nearly 70 members of the National Federation of the Blind of Denver signed a petition asking for swift removal of the “blind crossing” signs. Fortunately, the city traffic engineers listened to the local blind community, and the signs were removed. But, there was a backlash from Ms. Guenther, the concerned citizen who had demanded placement of the signs. In a lengthy letter to the city traffic engineer, she insisted that the motivation for the signs was not out of pity, but out of “respect that I have gained for [the blind] and a desire to further facilitate their efforts to merge into society.” She then rambled about various blind people she knew-a textbook instance of moral credentialing. Then she detailed the various negative consequences that could arise if a blind pedestrian was hit by a car. She even said that “blind associations” could be held liable if someone was hurt at an intersection after the signs had been removed at their request.

Herein lies my biggest issue with disability signs. They are almost always placed “about us, without us.” Ms. Guenther knew exactly where the CCB was located. She could have easily paid a visit to the center to express her safety concerns to the staff and offer to help find solutions. Frankly, it would have probably taken her less time to do that than to go on a letter-writing and calling campaign with the city. But, she didn’t say a word about her concerns to the CCB. And, once the CCB and the blind of Denver had the signs removed, she had the nerve to complain-not to the blind citizens themselves but to the city traffic engineer.

Similarly, “disabled child” signs are often placed by parents or neighbors without the participation of the child. Sometimes they are meant to benefit a child who can’t yet express an opinion. In those cases, I hope that parents will consider the opinions of adults and older children with similar disabilities before making a decision. Further, disability signs are absolutely not a panacea and they cannot substitute for other safety practices. Drivers need to be educated about how people with various disabilities might interact differently with traffic, and disabled children need to grow up learning both general and disability-specific traffic awareness skills. Many disabled adults are happy to share our insights on ways to make the roads safer and more inclusive for all.

Note: I am having technical issues with links today. Email me if you want to see the source for anything cited in this post. Arielle@disabilitywisdom.com

“I Was Just Trying to Help”: Good Intentions, Bad Consequences

Imagine you’re waiting to cross the street at a busy corner. It’s the end of a long day, and you just want to get home. Just as the light is about to turn green, two strangers come up behind you.

“You’re at a street,” one of them says in a kindergarten-teacher type voice. “Where are you trying to go?” the other one asks. Then before you can answer, the two strangers grab you, one on each arm, and start pulling in different directions.

How would you feel? And what would you do?

Now, let’s change a few things in the scenario. Perhaps you walk with crutches or a cane, and the stranger grabs your mobility device instead of your arm, throwing you off balance. Maybe you use a wheelchair and they try to push you off a curb. Maybe you’re blind and the voices distract you so you miss the parallel traffic surge and have to wait another whole cycle to cross safely. Maybe they’re nudging you to cross when the light’s not even green, because they’re drunk or not paying attention. Maybe you just had surgery on your arm and they grab you right in the spot that’s still healing, triggering shock and pain. Maybe you have a history of trauma or abuse, and the unexpected touch sends you into a panic.

How would you feel? And what would you do?

We can envision a whole host of harmful consequences emerging from this scenario. And, most people react to potential harms by trying to defend themselves. But, regardless of which scenario we’re looking at, the strangers here will almost always say they had good intentions. They were “just trying to help.”

Knowing they had good intentions, does that change how you would feel? Or what you would do?

These kinds of things happen to disabled people all the time. Having people ineptly try to “help” us gets exhausting and demoralizing, and sometimes can be outright dangerous. Interactions across ability lines are interesting in that, so often, there is a real disconnect between intent and consequence. The “helper” has good intentions but executes them in a way that can cause real harm. The disconnect is frustrating for both parties. If the disabled person responds to the consequence (by refusing “help” that is dangerous, for example), the would-be helper feels rebuffed, while the disabled person is perceived as rude for rejecting a well-intended act. But if the disabled person responds to the intent, accepting this “help,” they risk sacrificing their self-respect or even their physical safety. It can be a real struggle for two people across ability lines, who both want to be kind and polite, to know what to do. Especially when time is limited, like at a busy street corner.

Before I propose some remedies for this situation, let’s briefly examine some reasons why this gap exists between intent and consequence. Part of it lies in the lay belief that disabled people automatically need help, or the automatic perception that a disabled person is struggling. This occurs when people are stuck in the third stage of inclusion. People may abandon cultural norms (such as personal space norms) in order to “help.” Further, there are often misunderstandings of how experience differs across ability lines. Something that may be harmless when done to a nondisabled person can have harmful effects in the context of disability, which may be hard to predict ahead of time.

To give an example, sighted people often want to guide me by pulling on my body from behind or from the side. When somebody does this, I am no longer fully in control of my own movement, and my center of balance is disrupted. This makes me feel very unsafe, and in fact I have had experiences in the past where being pulled in this manner caused me to trip or bump into obstacles. So, I will not walk while anyone is pulling on my body. When I explain this to other blind people, they seem to understand, but when I explain it to sighted people, they are often confused about the potential danger. It is possible that sighted people might automatically compensate for this kind of disruption to their center of balance. So, often a sighted person will grab me, I’ll ask them to let go, and they will become confused and upset.

How do we relieve this frustrating disconnect between intent and consequence? Ideally, we figure out how to act on our good intentions in ways that have positive effects, not negative effects. The “would I do this to a nondisabled person?” is a good starting point. Before initiating an interaction, ask yourself, “Would I do this if the person didn’t have a visible disability?” For example, do I typically go up to strangers on the street and ask them where they are trying to go? If not, then maybe it’s best not to do to a disabled person either.

But, there’s more to it than that. Reconciling intent and consequence requires humility, patience, and willingness to listen. It involves recognizing that the other’s experience may be different from one’s own. It involves asking the other, or taking cues from them, on the best way to help or not help.

Last week I took a Lyft ride home. My driver, Leon, parked in the parking lot, and I had to cross a slightly uneven grassy area to get to the car. I found the grass with my cane and prepared to step up with my left foot. Leon grabbed my right elbow. I knew that the force on my right arm would make it more difficult for me to pivot over to my left leg, and that it put me at risk for losing my balance. So, I asked Leon to release my arm. Instead of getting offended or upset, he apologized and allowed me to get into the car independently. During the ride home, we discussed the incident and I explained how being grabbed on the side disrupted my center of balance. I suggested that if a blind person needed support with balance, that it is best to allow them to grab your arm instead of the reverse. Leon explained that he thought he was supporting my balance by grabbing me. His instinct was to do the opposite of what was safe for me. However, he was willing to listen to my perspective and learn what to do in the future with new passengers. I’m using Leon’s first name on this post because we often fail to recognize those individuals who are willing to grow and learn.

Reconciling intent with consequence starts with the “Stop. Ask. Listen.” Paradigm. Taking a step back, asking what is needed, and listening to the response. If there are barriers to communication (language differences, a nonspeaking person, time constraints, etc.) then adjust behavior according to the person’s nonverbal reactions (e.g., if you grab my arm and I break away, don’t grab me again). If we ask before acting, then we are guaranteed not to do something that is unwanted by the other. On the disabled side of the equation, I still struggle to know how to respond to the mix of good intent and bad consequence. I try to respond with honesty about what I want and need, but also with compassion for the other person’s good intentions. Some days I’m better at that than others. It is unfortunate when disabled people judge each other for how we respond in these difficult situations. I am encouraged by those nondisabled people who genuinely want to dialogue with us and learn from us. I am hopeful that we can work together to translate positive intent into positive action.

New Publication! Survey Sheds Light on the Ups and Downs of Employment for Legally Blind Americans

According to the 2017 Current Population Survey, about 2 million working-age Americans (ages 16-64) reported being blind or having trouble seeing. Of these 2 million Americans, only 35% had a job, compared with 70% of working-age Americans without disabilities. Even more concerning, only 39% of the blind Americans were in the labor force at all-meaning they were either employed or looking for work-compared with 73% of the working-age Americans without disabilities. So, a huge chunk of the blind working-age population in this country is not only unemployed, but also not looking for work. These numbers have changed little in response to the passage of laws like the Americans with Disabilities Act, or the proliferation of accessible computers allowing blind people to perform many more jobs independently.

My colleagues, Edward Bell and Mary Ann Mendez from Louisiana Tech, and I wanted to investigate the employment experiences of blind Americans from all three camps: those who are working, those who are looking for jobs, and those who are out of the workforce. We wanted to find out what helped the successfully employed workers find their jobs. We also wanted to find out what factors are keeping so many blind Americans unemployed or completely out of the workforce.

We sent an online survey to 559 Americans who are legally blind and at least 18 years old. I will say up-front that this was not a representative sample. Most of the respondents came from email listservs sponsored by blindness consumer organizations or other blindness-related networks. The people in these online networks tend to be more educated than the population as a whole; in our sample, 68% had at least a bachelor’s degree, and 36% had at least a master’s degree. This sample also consisted of individuals who had been blind for a relatively long period of their lives and who were well-connected with services and organizations. Despite the differences between our sample and the blind population as a whole, our sample gives us a look at some of the barriers that still affect blind people who have had a high level of education and training.

On the survey, we asked the participants if they were either (1) working for pay currently; (2) looking for a job; or (3) out of the labor force. We then asked each group different follow-up questions to learn more about their experiences. For the participants who were working, we asked them to describe their jobs and what resources helped them obtain their jobs. For the participants who were looking for a job, we asked them how long they had been looking, what resources they were using, and whether they had encountered discriminatory treatment recently in their job search. For the participants who were not in the labor force, we asked them why they were not looking for a job. The participants answered a combination of multiple-choice and short-answer questions to share their experiences with us. I will describe some of our most interesting findings here.

First, about half of the participants said they had a job of some sort-either full-time, part-time, or self-employment. Overall, the participants were fairly happy with their jobs and described getting good pay, benefits, and opportunities for promotion. The biggest factor that helped these participants find their jobs was networking: 40% found their job through networking with professional colleagues; 36% through networking with relatives or friends, and 20% through networking with previous colleagues, for example. (Participants could choose more than one resource). In addition, 20% said that a vocational rehabilitation (VR) professional helped them find their current job. Relatively smaller numbers of participants reported using traditional job-searching resources like job boards or recruiters to find their current job.

Second, about one-fourth of the participants were looking for work. The participants had been looking for an average of 18 months, and on average, they reported applying for about 5 jobs per month, but receiving less than one interview per month. Many of the participants described difficulties obtaining job offers, which were directly related to their blindness. For example, about one-third of the jobseekers said that they had to forgo a recent job opportunity because the posting required a driver’s license (even though the job itself did not require driving as a job duty) or because they didn’t have transportation to get to the job site. Others described strange reactions from interviewers; for example, an interviewer being enthusiastic toward them over the phone, and then acting awkward and distant when the applicant arrived in-person with their white cane. Another participant said they met with a recruiter who kept going on about how blind people have great “intuitive senses” and suggested taking classes to become a psychic. The participant wrote, “He spent more time talking to me about psychics than about a job. I found this very demeaning.”

Third, about one-fourth of the participants said they were not working and not looking for work-in other words, they were out of the labor force. Of course, some of these participants were retired or in school (as in the general population). However, others reported not looking for work because of transportation barriers where they live, because of health issues in addition to blindness, or because they were worried about losing disability benefits if they worked part-time.

Finally, we asked all the participants (even the retired ones) to reflect on various resources throughout their working lives, and to tell us how much each resource helped them with employment. They also rated how much a series of barriers interfered with their employment. The participants rated assistive technology, comprehensive blindness training, and resume/cover letter training as the three most helpful resources; traditional resources like recruiters, job developers, and career fairs were rated as relatively unhelpful. The top three barriers were transportation, trouble finding jobs in one’s area of expertise, and inaccessible job applications or screenings.

There are a few important takeaways from these data. On the positive side, networking is a powerful tool that can help individuals overcome employment barriers. Networking is important for jobseekers more generally; however, it may be especially vital for blind jobseekers. Colleagues who know the person’s strengths can help advocate for their potential and overcome employers’ doubts about hiring a blind person. Networking was more effective than conventional job-search resources in helping people secure good jobs. VR is also a valuable resource, but its impact seems to come from indirect supports (purchasing technology or funding training) rather than from direct job placement. VR programs may wish to focus more heavily on assisting clients with building up their professional networks.

Furthermore, transportation is a huge problem. A lack of affordable, efficient transportation limits blind jobseekers’ options and can lead to discouragement and withdrawal from the workforce. We live in a very car-centric country, where public transportation may not be efficient, accessible, or available at times when workers need it. Research is ongoing to develop individualized programs that can help blind jobseekers make transportation plans to get to and from work. However, to really solve this problem, we need to work with our local and state governments and private transportation companies (like ridesharing companies) to make non-driving options available to every American at an acceptable pricepoint. Other barriers include employer ignorance about blindness, inaccessible job applications, and discriminatory job posting wording, such as job postings asking for a driver’s license. There is a need for better training and enforcement to ensure that job postings are written to truly welcome all qualified applicants. These barriers can challenge jobseekers who are highly educated and well-connected, as in our sample. It will be important to conduct further research to learn about the experiences of blind people from other demographic groups, particularly those who are newly blind.

Overall, we know that good employment is attainable for blind people in this country. But right now, it’s not yet available to every blind American. Let’s work together to open up the possibilities.

Citation: Silverman, A. M., Bell, E. C., & Mendez, M. A. (2019). Understanding the employment experiences of Americans who are legally blind. Journal of Rehabilitation, 85:1, 44-52.

Download the full article here