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Blind in the City, disability etiquette

Blind in the City (and Disabled in the Skies): Exploring Air Travel and Disability

As I mentioned in last week’s post, I’m a semi-frequent flyer, and have been since my college days. Strangers I meet in airports often seem shocked to see me navigating the airport independently with my white cane. In this post, I want to try to take some of the mystery out of that process. At the same time, though, air travel isn’t always smooth sailing for disabled people. In the United States, the Air Carrier Access Act protects our right to fly independently, and to receive needed accommodations during the trip. Still, though, misunderstandings and failures of implementation result in civil rights violations, equipment damages, and other problems for disabled air passengers. I will outline some of these ongoing problems and needed solutions at the end of this post.

Q: How do you navigate the airport without a travel companion?
A: Like any other travel task, air travel is more manageable when broken down into its component steps. For me, a typical flight experience involves checking in, locating and going through a security screening, locating my departure gate, boarding and deboarding the plane, (occasionally) collecting baggage, and finding ground transportation. For each of these steps, I utilize a variety of nonvisual landmarks. For example, security checkpoints make distinctive sounds; gates are usually numbered in consecutive order; and when boarding the plane, I can simply follow the person ahead of me in line. For other things, such as locating a specific baggage carousel or exit door, I ask passers-by to describe visual information such as that printed on signs. By asking for help only with one part of the process at a time, I can greatly reduce my dependence on others.

As I will explain later in this post, I prefer to keep a low profile in the airport so as to avoid being patronized or drawing unwanted attention to my disability. So, I typically check in for my flights using the airline websites and navigate directly to the security checkpoint. I rarely check bags, but when I do, I can recognize my suitcase by touch on the conveyor belt

Q: What kinds of accommodations do airlines provide?
A: Airline and airport employees offer a variety of accommodations to passengers with disabilities. When navigating the airport, passengers can request a walking escort to provide directional guidance or assist with luggage. Passengers needing mobility assistance may use a borrowed manual wheelchair with an employee serving as a pusher. Wheelchair users must typically check their chairs as luggage and use a borrowed aisle wheelchair to board and deboard the plane. Some passengers, such as those with intellectual or developmental disabilities, may request to have a family member or friend who is not flying with them accompany them through security to their gate.

Passengers with service dogs are permitted to bring their dogs with them on flights without having formal proof that the dog is a service animal, as long as they can explain what task the service animal performs. In addition, passengers with emotional support animals (to assist with mental health disabilities) can bring their emotional support animals if they are properly documented. Passengers using service animals, and other passengers with particular accommodation needs, may request to “preboard” the plane before the rest of the passengers board. This may be necessary to allow enough time to settle a service animal, secure equipment, avoid standing in a long line, or gain a preferred seat (such as a seat near the front for someone with a mobility disability).

Q: Why don’t you just use the employee escorts at the airport? Wouldn’t that be so much easier?
A: I have no philosophical objection to using accommodations that might help me have a better travel experience. There are occasional times when I do use airport escorts. However, I have learned that much of the time, the quality of service is lacking. For example, if employees are spread thin, I may end up waiting up to 30 minutes for an escort. In those cases, it is simply faster for me to navigate the airport on my own. I have also had escorts who guided me to the wrong place.

Another common problem is the lack of control we often have over what specific accommodations we get. Many of us who are blind, but who don’t have mobility disabilities, have found ourselves in situations where we requested a walking escort and instead were pressured to travel in a manual wheelchair with a pusher. In these cases, we are often expected to choose between an inappropriate accommodation (a wheelchair) or none at all. To complicate matters, wheelchairs are in limited supply. While we are being pressured to accept wheelchairs we do not need, other passengers with mobility disabilities may be waiting far too long for a wheelchair they do need.

I must emphasize that truly effective accommodation is different for each individual, and sometimes a person’s accommodation preferences differ from day to day. It is important for airlines to offer accommodations so that passengers with disabilities can fly. But, equally important is a system that allows disabled passengers to choose the accommodations that work for them. Unfortunately, in practice, airline and airport staff often act on assumptions about accommodation needs, instead of actively listening to their customers. For example, passengers with visible disabilities, like me, often find ourselves fighting off accommodations we don’t need. In contrast, passengers with invisible disabilities may find themselves fighting for the most basic accommodations.

I keep a low profile when I fly because I want to be in charge of my travel process and choose the assistance that works for me without having unnecessary or patronizing assistance foisted upon me. I recognize that this is a privilege I have. Many other passengers rely on some form of accommodation in order to fly. They, too, must have the freedom to choose the most effective accommodations.

Q: What other issues affect disabled air passengers today?
A: In some countries, passengers with disabilities aren’t allowed to fly without a nondisabled companion. In the United States, disabled people are permitted to fly independently, except in some rare circumstances involving multiple disabilities that prevent a person from assisting in their own emergency evacuation. Despite legislative progress in the United States, however, misunderstandings and failures of implementation can lead to serious problems. Here are a few recent examples:

  • D’arcee Neal, a disabled activist with cerebral palsy, needed an aisle wheelchair to exit a United Airlines flight. He waited for more than 30 minutes without receiving a wheelchair. In desperate need of the restroom (the airplane lavatory is not wheelchair-accessible), Mr. Neal crawled off the plane.
  • Recently, several wheelchair users have had their chairs accidentally broken by baggage handlers unfamiliar with the equipment.
  • Guide dog users, and other service animal users, have found themselves re-seated or even denied boarding based on a claim that there wasn’t appropriate space for their dogs.
  • Blind people who use white canes have had canes separated from them and stowed in a closet or placed in the overhead bin against their preferences. In fact, the law provides for a blind person to stow their cane on the ground between the window seat and window, where it is safely out of the way.
  • Clifton Miller, a blind grandfather, was denied boarding on a Frontier Airlines flight last year. The gate agent questioned whether Mr. Miller could properly care for his 18-month-old granddaughter on the flight. In fact, Mr. Miller had been a single father and had just spent several days alone with his young granddaughter.
  • On my 30th birthday, my husband and I boarded an American Airlines flight on our way to visit my family and friends for the weekend. Due to my blindness, I was ordered to sit in the window seat because, I was told, if I took an aisle or middle seat, I would be blocking the exit of other passengers in an emergency. (Ironically, due to my blindness, the window seat offers more value to my husband than it does to me). Eventually, the flight attendant apologized and admitted that he had confused an “exit seat” (non-window seat) with an “exit row seat” from which disabled passengers are categorically banned. (This ban is, itself, highly controversial in some disability circles). Unfortunately this apology only came after my (nondisabled) husband followed up, mainly because I was too shocked and shaken to do so at the time.
  • More generally, disabled passengers are often told that, in the event of an emergency, we should wait to be assisted by a flight crew member. The assumption that we will always need to wait for rescue is often the driving force behind instances of discrimination. It seems not to occur to all airline staff that in an emergency, disabled people will be using whatever resources are at our disposal to get ourselves to safety as quickly as possible.

In sum, air travel has become much more accessible in recent decades, at least in the United States. But we still have far to go. Much of the progress we need will depend on initiatives to educate airport and airline staff about the varied experience of disability and the most appropriate allocation of resources. By learning how we live our daily lives on the ground, perhaps air travel staff will be better prepared to provide us with an accessible, respectful travel experience.

Autism, Family, Solidarity

Respectfully Connected: The Lady on the Plane [Repost]

“I’m hopeful that maybe that woman slept a little bit more soundly, more restfully than she has in many years. Because she now knows that her grandson is exactly who he is supposed to be, and that it isn’t anyone’s fault, but just life as it is meant to be.”

I fly alone at least twice each year. Sometimes I focus on my music or my laptop during those flights. Other times, I strike up conversations with seatmates. Usually these conversations are brief and inconsequential. But as this post reveals, sometimes a chance conversation with a stranger on a plane can change that person’s life.

Even in todays “information age,” misinformation about disabilities abounds. In fact, the ready availability of answers with a single Google search allows misinformation to spread without its credibility being questioned. Much of the misinformation about disabilities surrounds their causes, fueling the centuries-old notion that family members are to be blamed for a child’s disability. Sometimes, the best people to correct such myths are those of us who live with disabilities and see them as a natural part of the human condition.

The author of this week’s post, Morénick, is an autistic woman in a multicultural, neurodiverse, serodifferent family of color. She describes a chance conversation on a plane, where she assured her seatmate that immunizations didn’t cause her grandson’s autism, but more than that, that her grandson is OK as he is. By briefly presenting correct information and the wisdom of lived experience, she interrupted a cycle of guilt and fear that was based on misinformation.

Sometimes I feel discouraged when I look at the depth of ableism around us, and wonder what I, just one person, can do. Perhaps the answer is in those chance meetings that pop up when we are just out living our lives. We never know how much a stranger might need our wisdom.

The Lady on the Plane

ableism, Family, Guest post, Solidarity2

Four Tips for Crossing the Disabled Adult-Parent Divide [Guest Post]

When a nondisabled parent discovers that their child has a disability, they are thrust into a uniquely difficult position. They must learn to support and accept an aspect of their child’s experience that is usually unfamiliar to them. Despite the fact that up to one in five people has a disability, most nondisabled parents have not gotten the kind of disability exposure needed to really understand and accept their child’s disability. As a result, many parents in this situation tell me they are overwhelmed, sad, devastated, terrified, or have other intense negative reactions to a disability diagnosis for their child.

An increasing number of parent support groups have emerged on social media for parents of disabled kids. This is, overall, a very positive thing that allows parents to share experiences and advice with other parents. Disabled adults frequently join these groups to share their own childhood experiences and advice with parents. This, too, is perceived as a helpful thing by many parents. Disabled adults can offer the kind of cultural awareness and knowledge based on lived experience which parents rarely get in the wider world before they have a disabled child.

However, as this week’s guest post points out, sometimes tensions can arise in online groups between nondisabled parents and disabled adults (with disabled parents often ignored altogether). As in any online environment, tactless and disrespectful comments on either side can destroy an otherwise supportive climate. But there are also intergroup dynamics that may arise in these groups which mirror the historical ableism patterns that disabled people have experienced for centuries. Parents new to the disability community may not recognize these patterns. The intent of this guest post is to help parent groups build policies that allow parents to fully benefit from the support of disabled adult members.

Four Tips for Crossing the Disabled Adult/Parent Divide
By Tasha Chemel

In the disability community, there tends to be an artificially imposed divide between parents of disabled children and disabled adults. This divide can become magnified in online support groups where miscommunications abound and the tone and intent of posts can easily be misinterpreted by both sides. The good news is that I strongly believe that this divide is far from inevitable. Based on my own experience as a blind adult member of two groups for parents of blind and visually impaired children, I offer four tips for how parents and disabled adults can work together to create parent groups that are conducive to dialog and collaboration.

1. Mixed messages.
As disabled adults, we sometimes receive confusing and mixed messages about the nature of our role in parent groups. It often seems that though we are permitted to give tangible and concrete advice about finding the best screenreader/laptop/¬cane/wheelchair, etc., our efforts to reframe parents’ questions are not always appreciated. For example, a parent might ask about the best way to get a road sign installed stating that a blind child lives in their neighborhood, whereas a blind adult might point out that this kind of sign might be stigmatizing for the blind child. Some parents get upset when such reframes occur, and this is partly because they were not asking for a reframe in the first place. I think the ground rules have to be clarified here: if the parent group as a whole doesn’t want to allow these reframes, then this has to be made explicit. Disabled people will have to decide whether they are all right with having a conditional role in the group.

2. Safe Spaces
When a child is newly diagnosed, fighting ableism on a systemic level is the last thing most parents are thinking about. Many parents are struggling to simply get through each day. For this reason, it’s not surprising that they need a place to grieve and vent. When disabled adults join parent support groups, it should be with the understanding that parents are at different places on their journeys, and that some interactions might be very helpful for parents but are not necessarily healthy for us to witness. Sometimes we might have to step back from the group as a result. At the same time, there is a difference between a parent who expresses grief and a parent who makes sweeping generalizations about all disabled people and acts defensively when a disabled adult attempts to educate them. Disabled adults should feel free to seek out admins in these types of situations, without being afraid that the admin will use parents’ need for a safe space to shut down any mention of ableism. In addition, the group should decide whether it will allow public call-outs.

3. You’re not a parent.
A common response I receive when posting to blind parent groups is that I am not a parent so my comment is not valid. This is true. I can’t speak to what it’s like to parent a blind child. I can, however, speak to the lived experience of being one. This is a valuable perspective for parents, since disabled children become disabled adults. As a disabled adult, I’m uniquely qualified to talk about how my parents’ decisions have affected me. When disabled adults post to parent groups, they do have to keep in mind that there are aspects of a situation they might not be thinking of. For example, if a disabled adult suggests that a parent take time to do something for his or her child that is very labor-intensive, they are not considering that the parent might have other demands on their time, such as additional siblings or work responsibilities. At the same time, parents shouldn’t dismiss comments made by childless disabled adult’s simply because they are not parents. They also shouldn’t automatically assume that a disabled group member is not a parent, or that a parent member is not disabled. Disabled people can and do parent disabled children, and the assumption that all disabled people are nonparents is rooted in unintentional ableism.

4. Silencing of Disabled Adults.
Finally, disabled adults have historically been silenced or spoken over by parents and professionals. When a post written by a disabled adult gets deleted, it sends a message that the adult’s perspective is not important or not welcome. If a post gets really out of hand, freezing it, rather than deleting it, will usually solve the problem. IF a parent group has collectively decided that it wants disabled adults to be valued members of the community, then the group must do its best to ensure that the deeply entrenched patterns of silencing of disabled people are not replicated.
Tasha Chemel is a blind writer, teacher and potter. She has master’s degrees in social work and education from Boston College and the Harvard Graduate School of Education. Currently, she is a writing tutor at two universities and is also completing an internship in academic advising. her essays and creative work has appeared in Wordgathering, Getting Along with Grief, Breath and Shadow, and the anthology Barriers and Belonging. Find her on LinkedIn at https://-www.linkedin.com/in/¬tasha-chemel-bab8556/

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.

ableism, Advocacy, Solidarity

How Would We Know If We Overthrew the Mental Health System? (Repost)

I found the below article very thought-provoking. I don’t agree with all the ideas expressed in it, but I believe it gives us a lot to think about as inclusion advocates-not only regarding how we treat people with “mental health conditions” but also how we think about things like consent, competency, and who gets to define disability.

I don’t personally agree that psychiatry is a “pseudoscience” or that it should be entirely overthrown. In a limited number of cases, particularly ones in which an individual’s behavior threatens another’s safety, a brief hospital stay may be the only feasible solution. Similarly, I imagine there are individuals who are genuinely, subjectively suffering from their symptoms, and benefit from psychiatric interventions.

However, I am troubled by the diversity of human traits and tendencies that are classified under the DSM-V as symptoms of mental illness, and the clusters of traits and tendencies that are pathologized as mental illnesses. Sometimes, I try to imagine meeting a person who has absolutely none of the symptoms of any DSM-V diagnoses. This mythical person would be in constant emotional balance with never a hint of anxiety, depression, rage, or mania. They would never exhibit any impulsivity, hyperactivity, inattention, or apathy. When I contrast this mythical individual with real people in my life (including myself, as I am definitely not free from neuroticism), I can’t help but imagine that this mythical person would also lack passion, creativity, empathy, attention to detail, and so many other uniquely human characteristics we prize. In fact, the thought experiment always leaves me feeling a little, well, depressed.

This article also raises important issues about the role of medical professionals in the disability experience. Under current policies, medical professionals have the authority to deem an adult as decisionally incompetent. Is any individual truly incompetent to make decisions regarding their own life? And if so, what criteria should be used to make that determination? Is there a magical cutoff on some assessment tool that means a person must give up their autonomy?

Furthermore, across all types of disabilities, medical professionals currently act as gatekeepers, determining who is or is not eligible to receive disability-related supports. This applies not only to income and lifesaving healthcare benefits, but also to vital educational modifications, communication aids, etc. a medically driven eligibility system not only penalizes people who don’t have the resources to access a medical proof of disability, but it also seats disability as an individual problem affecting a stigmatized few, rather than a part of the human condition that can be ameliorated in a cooperative way. I agree with the author in advocating a universal basic income in place of a medically driven disability benefits system. We must also find a way to bring down the cost of assistive technology and training so that it becomes available to all consumers who need them, without having to have that cost subsidized by a medically controlled service system.

How Would We Know If We Overthrew the Mental Health System?