June 2023 - Monthly Newsletter
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Activism, Adaptation, or Awareness?
by Andrew Pulrang
I have been thinking a lot about three of the main types of activity in modern disability culture:
1. Activism: Protest, policy development, and political lobbying to dismantle the structures of ableism and build better supports for disabled people.
2. Adaptation: Practical techniques and strategies for disabled individuals to cope with their disabilities and the barriers and discrimination they face.
3. Awareness: Information. education, and persuasion to change how disabled people are viewed and treated in everyday life.
(All three of course are under the umbrella of the “Social Model,” and don’t include the opposite slate of “Medical Model” pursuits like corrective surgeries, medications, and therapies).
Activism, Adaptation, and Awareness aren't just different approaches. Each has partisans who speak as if they are the only proper approach to disability. Each approach also has critics who disparage it as weak, distracting, or even harmful to disabled people.
So what? And what prompted me to think about this?
I have been thinking about these conflicts, these pros and cons of different approaches, for a long time. Classifying things helps me understand them better. It feels that way anyway. And a lot of the time I see disabled people arguing with each other, especially in social media, it seems to boil down at least partly to clashing approaches to roughly the same set of problems — such as ableism and inaccessibility. What, exactly, are disabled people arguing about and advocating when they criticize each other? My thinking and worrying over this intensified recently after some negative reactions to a recent Forbes article of mine, linked here and reprinted below:
6 Things Disabled People Can Do To Prepare For Disability Discrimination
It’s not one of my best articles. It concedes too much to ableism. It can be too easily read as implying that it's disabled people's job to cope with disability discrimination in the workplace, not non-disabled people and management's job to stop it.
I also think that in political environments where some disabled people are pressured to "get a job or else lose benefits," tips for disabled people to do better in the workplace can compound that pressure, rather than relieve it. Some disabled people want very much to work, and really do crave advice on how to navigate the barriers they face in the workplace. But plenty of other disabled people understandably read “employment strategies” and lessons on “workplace skills” as thinly veiled mandates or threats. Advice for disabled people to be more successful at work may be genuinely helpful and welcomed for some disabled people. But for others, it’s just more support for the notion that it’s individual disabled people who are wrong and need to do better, not employers, government regulators, and courts charged with defending disability rights laws.
I understand how discussing more effective “Adaptation” can seem to pin all the responsibility for fixing ableism on its victims — and even how promoting “best practices” for disabled workers can hand employers more tools to penalize them when they don’t perform exactly to unrealistic and unjust expectations. I’ll try to do better going forward.
But it does also seem like there's an unwillingness by some ardent activists to even discuss personal, practical approaches and strategies for coping with ableism when it actually occurs. Advocacy and activism are absoultely keys to disability rights and justice. But lots of disabled people I have met, in person and online, really are more hungry for effective "life hacks" than for anything the activists community has to offer. When a boss denies a disabled worker the accommodations they need, the best answer may well be, “Fight for stronger disability rights laws.” But individual disabled people often also want to know what they can do, in the moment. to improve their own situations.
Meanwhile, many disabled people feel that "Disability Awareness" is a meaningless phrase, and that truly changing people's minds about disability isn't something you can accomplish with a group exercise or an entry-level seminar. Worse, “Disability Awareness” activities are often used by business and other institutions as a softer substitute for more substantial changes. On the other hand, a lot of everyday ableism really does arise from ignorance and misconceptions about disability that should be easily fixed with positive persuasion -- rather than just angry, complex, high-stakes advocacy.
So how do we discuss one approach to disability without neglecting the others?
How do we talk about disability in ways that fully incorporate activism, adaptation, and awareness approaches in a balanced way? How can we talk about effective ways for individual disabled people to respond to workplace ableism, without making them feel solely responsible for fixing ableism? How do we talk about changing non-disabled people’s perceptions of disability, without implying that disabled people are required to be 24/7 unpaid disability awareness consultants? How can we acknowledge and discuss about what can work well for individuals, while never forgetting that at least some forms of ableism and inaccessibility can only be fixed through collective action?
Which approaches to disability and ableism do you prefer? And what ideas do you have on how and when to talk about them?
Recommended …
Some of the more interesting articles on disability topics I’ve read over the last month:
My parents have been a lifeline since I became disabled. But now they are pulling away
Anita Chaudhuri, The Guardian - May 11, 2023
I’m always interested when standard advice columns deal with disability-related issues. The approach here seems fairly conventional, though it may be right too. But here again, as discussed above, it’s disabled people who get the job of diagnosing and curing other people’s possible ableism. What advice might we give to the parents on how to forthrightly and respectfully communicate with disabled sons and daughters about disability?
Apple introduces new features for cognitive accessibility, along with Live Speech, Personal Voice, and Point and Speak in Magnifier
Apple Corporation Press Release - May 16, 2023
I really need to do more research into the implications of “Artificial Intelligence” for people with disabilities. For now, these new features seem pretty cool. But they also connects rather well with this satirical piece in “The Squeaky Wheel” — ‘Artificial Intelligence Will Steal My Job!’ Fears Service Dog.
37 years and over 100 arrests: Longtime disability rights icon Anita Cameron is retiring from protests
Sara Luterman, The 19th News - May 18, 2023
Anita’s career and insights are essential reading. Sarah’s article let’s Anita’s personality shine through, and helps make many aspects of recent disability history and controversies easier to understand and more fully appreciate.
Northwestern doctor examines why patients with disabilities face discrimination
Audrina Bigos, Edie Kasten, CBS News Chicago - June 1, 2023
I think it’s tempting for outside observers, or for the medical side of the doctor / disabled patient relationship, to doubt or dismiss conflicts between disabled people and the medical profession. It might seem like disabilities themselves guarantee a more frought and less satisfying partnership. But there really are systemic biases and bad practices at work that the medical profession, specifically, needs to address — problems and bad outcomes that don’t have to happen.
Delta unveils first wheelchair-friendly seat
Hannah Sampson, Washington Post - June 6, 2023
This looks like an important first step — and in the right general direction. I just hope that a bit of progress on the design side of things doesn’t end up taking pressure off airlines and their personnel to simply handle disabled passengers and their wheelchairs better, each time, one at a time.
At Forbes.com …
6 Things Disabled People Can Do To Prepare For Disability Discrimination
May 23, 2023
Curbing disability discrimination in the workplace is everyone’s responsibility. And it’s unfair, though all too common, to place all of the burden on people with disabilities to absorb, defuse, or fight disability discrimination themselves. But what can people with disabilities do to prepare themselves for possible – and unfortunately probable – workplace discrimination?
Most disabled people in or approaching the job market want some assurance that if they do run into ableism in the workplace, they themselves will have tools to handle it, hopefully with valuable allies, but alone if necessary. This mix of anxiety and hope can have an enormous impact on disabled people’s employment plans and aspirations.
Businesses, organizations, and employers of course have their own responsibilities and roles to play, to improve workplace disability inclusion and equal opportunity.
To start with, they can genuinely respect and fully enforce disability rights laws. Employers can continue to inform themselves about laws like the Americans with Disabilities Act, ADA Accessibility Standards for public accommodations and workspaces, and similar state level regulations. Most importantly, they can resolve to do this not in order to figure out ways to avoid complying or merely evade lawsuits, but to carry them out in good faith.
With this guidance, employers can enact and implement inclusive company policies. Beyond the scope of laws and regulations, companies and everyone in them can make real efforts to hire people with a variety of disabilities, make their work experience safe and rewarding, and of course serve customers with disabilities at least as well as they serve everyone else.
Meanwhile, purely educational and symbolic initiatives have some value too, such as disability awareness days and Disability Pride Month each July. Done right and in good faith, these can add up to more than empty PR gestures. Awareness-raising activities can help ensure that not just lawyers and Human Resources professionals, but management and all staff better understand disability issues and disabled people.
But these are all institutional tools. They can help, but often feel less responsive and practical for actual disabled people worried about or experiencing real-life discrimination in the moment. The question still remains – what can employees and job applicants with disabilities actually do, for themselves, to fight and defuse disability discrimination?
Here are six broad questions disabled people can work on, at any stage of their careers, to become their own best advocates:
1. Know your disability
What actually is your disability? Is it physical, sensory, cognitive, or emotional? Does it have a specific name, and if so, will most other people recognize and understand it if you told them what it is?
Knowing the medical side of your disability is important. But in the job market, it’s more important to have a good grasp of how your particular disability does and doesn't impact your work. Do you need physical adjustments in the workplace, flexible schedules and deadlines, changes in the usual procedures, or just a more general understanding of difficulties you sometimes deal with? Or, does your disability have essentially no impact on your work at all?
And what is the right tone and level of detail to talk about your disability in different situations? When is it helpful, for yourself or for others, to talk about your disability? When is it better to keep it to yourself? Should you be casual and easy going about it, or serious and assertive? Is it better to be very complete and detailed, or broad and even a bit vague?
Finally, what is your own comfort level with discussing your disability? Whether or not it is essential or helpful, do you feel safe and confident talking about your disability? Or, is it extra hard to advocate for your needs and put people at ease, because right now you are not fully at ease with your own disability?
All of this is seemingly obvious that we often overlook it. But understanding and being able to talk about our disabilities can be more complicated and stressful than it seems.
2. Anticipate
What are the most likely points of obstruction or discrimination? Consider your particular disability, the job expected of you, and the workplace social climate, if you know it. Can you expect support, fellowship, and understanding from coworkers and managers? Is it a cutthroat culture where any sign of “weakness” is noticed? Will you be the first or only disabled person these people have ever worked with?
More generally, should you realistically expect any physical, procedural, communication, climate, or emotional barriers and complications? Where is the balance between hoping for the best while preparing for the worst? Whenever possible, base these evaluations on past experience, and an honest look at the environment you are or will be working in.
The good news is that disabled people themselves are in the best position to see the most likely obstacles ahead. Disabled people can for the most part trust their own instincts. Those working with them should trust disabled people’s instincts too.
3. Develop solutions
What can you do to solve problems you’re most likely to face? Will you need a bigger work space than the once assigned, to accommodate a wheelchair or other mobility aids? Will you need Sign Language Interpretation or large print materials for important meetings and training? What happens if you have to deal with a coworker who continually makes demeaning “jokes” about your disability?
As much as possible, come up with possible solutions ahead of time. These solutions should satisfy the employer of course. But they also need to be physically practical and emotionally sustainable for you. Again, past experience can help a lot, if you have it. And come up with more than one viable option if you can.
Some solutions are common sense, and only require good communication and reasonable buy-in from management. For more difficult dilemmas, there are expert resources like the Job Accommodation Network.
Having your own solutions rather than simply expecting others to solve problems for you makes it more likely that you’ll find something that actually works for you. Plus, being able to think of your own practical solutions is also a good way to show your mastery of the job itself.
4. Disability rights laws
It’s never too soon or too late to find out for yourself what can laws like the ADA actually do for you.
Start with a broad overview. For employment situations, focus most on Title I of the Americans with Disabilities Act, which covers employment and workplaces. And look into which laws most directly apply in specific cases. It’s not always the ADA. Your situation might be better addressed by state or local laws or regulations. Also take note of the extent and limits of each disability rights law’s protections. They’re not all the same. And be sure to look up the law's past record of use – how it has actually worked for disabled people who experienced disability discrimination.
For better or worse, disability rights laws do a better job of laying the groundwork for justice and setting standards for equal access than they do at satisfying any particular disabled person’s immediate needs. It’s not enough to just wield the ADA like a protective talisman. It has specific uses and limitations. These laws are still essential tools. But it’s best to be clear about what they actually do and what you can expect from them.
5. Planning
If you do run into discrimination and want to do something about it, what steps can you take, in what order? Think in terms of starting with low level informality and moving step by step through higher-rank and more bureaucratic approaches. Try friendly and collaborative approaches first, but go adversarial when necessary. Begin internally, within the organization, but be prepared to bring in outside regulatory and legal support if needed. Don’t try to do everything at once, especially in more complex situations. Long-term processes can be exhausting. But that’s all the more reason to plan ahead for it.
And what do you want? What are your goals? Do you want to maintain the status quo, improve on it, or leave altogether but get fair compensation? What you want to achieve is key to planning your strategy.
6. Emotionally prepare
How do you handle upsetting encounters with personal ableism? One approach is to develop firm but friendly responses to the most common disability “microaggressions.” Part of that is deciding for yourself which ableist comments you find irritating but acceptable, and which are really hurtful and need to be addressed.
Also, think about how to process your hurt and anger. What are the best ways for you to express your anger? And when and how can you hold back your anger, without letting it become toxic?
Expect ableism from anyone, even from good people and trusted friends. Like so many other forms of prejudice, ableism is pervasive in society. So it’s not always a sign of evil intent or bad character when someone says or does something ableist. Knowing that may or may not help you curb your anger. But it should at least mean you are less shocked when someone you like and respect suddenly says or does something ignorant or hurtful.
And don’t worry too much about whether your responses to ableism and disability discrimination are “justified” or “reasonable.” Maintain a sense of proportion and fairness to others. But be honest about our own feelings, and mindful of your own emotional health.
None of these are surefire formulas for successfully beating disability discrimination. They aren't sufficient by themselves. But they might help to give you a chance.
5 Things I Wish I Understood As A Disabled Youth
March 31, 2023
The recent death of American disability activist Judy Heumann and dedication of a memorial statue for Australian disabled comedian, advocate, and journalist Stella Young, have me thinking about the lifespans and unique learning experiences of people with disabilities, and what disabled adults would want to tell our younger selves if we could.
Both Heumann and Young were disabled women, pioneers of disability rights and culture, and role models for disabled people around the world. Stella Young’s death in 2014 was one of the first times in my life as a disabled person that I thought deeply about what I would say to my disabled teenage self. And Heumann’s passing in March 2023 raised those questions for me again.
Everyone has things they would like to say to their younger selves — mistakes they wish they could retroactively warn themselves about, plus fears and obsessions they had as youth that they know now haven’t turned out to be important in the long run. This can be doubly true, and twice as potentially impactful for people who were once disabled youth and have since grown into mature disabled adults.
For some time, the idea of “a letter to my younger self” has been an occasionally recurring theme in disability culture.
The first example I remember was in fact Stella Young’s 2013 article, "A letter to my younger self. In it, she explored the differences between what seemed important and worrying to her as a disabled youth, and what turned out to be her more difficult but still manageable challenges later in her life. Stella's letter focused a lot on love and relationships, because like so many significantly disabled teens, she both craved them and believed they might be impossible for her because of her disabilities – something which turned out not to be true for her at all. Young’s letter also focused on discovering more positive ways to embrace her disability – empowering ideas that came not from her otherwise supportive family, but from other disabled people.
A year later, I ran across a Tumblr collection of similar letters by disabled adults to their younger selves,: "Letters to Thrive: Letters by Women with Disabilities to their Younger Selves,” curated by disabled activist Sandy Ho. In one of the featured letters still available, "Dear 14 Year Old Isabella," the writer describes how something that later in life can seem like almost nothing can feel like a defining, defeating characteristic when you are young – such as a visible scar. As disabled youth, we sometimes worry about comparatively insignificant things, and ignore or even fail to notice what later are much more important and difficult challenges, as well as opportunities.
And in the 2020 letter "Disability and me: an open letter to my younger self," Raya Al-Jadir tells her younger self that she is proud of her. While as an adult she wishes that some things had been different, and that she could have had disabled mentors to talk to her of possibilities rather than obstacles, she is still happy with how her life has turned out, thanks partly to her strength and determination in youth.
While I myself haven't gone so far as to write a letter to my own teenage self, I do have thoughts as someone who grew up with disabilities and still have them, about what I might want to tell disabled youth today.
1. Connecting with other disabled people is a good idea.
It can be hard to believe when you feel so different and are so often treated as tragic, fragile, and one-dimensional but disabled people aren't depressing, boring, or embarrassing. Getting to know them and spending time with them won’t be upsetting or drag you down. If you feel otherwise, you may need to break through your own internalized ableism — the way you consciously or unconsciously buy into disability stereotypes and stigma. You can be socially integrated with non-disabled people, like a “regular person,” and connect with disabled peers too.
That’s a good thing, because disabled people can understand some of your experiences, dreams, and worries like no one else can, even your parents. Disabled adults can be uniquely valuable mentors and role models.
Look at it this way. Don't allow yourself to shun other disabled people the way it so often seems like non-disabled people shun you.
2. It's important to create your interests and plans as soon as possible.
There are probably lots of people mapping out agendas for you, even if you aren’t at all sure about what kind of life you want for yourself. While some disabled youth are terribly neglected, most in some way are fussed over and pulled in different directions by well-intentioned people who feel they know what’s best. This can include parents, teachers, doctors, therapists, counselors, and even random strangers.
It may seem like making your own future plans – for college, work, building a family, and the like – is less important because of all the others who seem to have a stake in your future. But it's actually more important for disabled youth to plan ahead for adulthood than it is for young people who don't have disabilities – if only to make sure you have a say in your own future.
You will also probably be told to be realistic. That’s good advice, up to a point. Setting realistic goals is helpful, but it’s not necessarily essential. Don't limit your options too much or soon, just because you have disabilities. Go ahead and dream big, and then make realistic plans to get there.
3. Be more confident about some things.
Seriously question what you may assume you will never do because of your disability – like go to college, have a job, drive a car, live on your own, fall in love, get married. Especially take Stella Young’s message to her younger self seriously, and don't rule out love and relationships. Know that they are possible for you. But at the same time, don’t obsess over “getting” a boyfriend or girlfriend either.
Above all, start to imagine yourself as a contributor and participant in your community and the world, not just a passive observer and recipient of help. Think about giving as well as receiving friendship, love, and help to others. Get used to pitching in instead of just watching. At the same time, don’t feel bad about needing and asking for help. Do what you must to cope as effectively as possible with your disability, on your terms.
Believe in yourself. Learn to put yourself forward. Don’t wait to be asked.
4. Be a little less confident about other things.
Be proud of yourself and your accomplishments. But also be skeptical about certain kinds of non-specific over-praising that some adults feel compelled to shower on disabled youth. Whatever seems to be your best quality, which everyone praises, question it. Ask yourself, "Am I really that brave, talented, and inspiring — or am I just exceeding very low expectations?'
And don’t take what you have for granted. If your life seems fairly secure and safe, don't assume it always will be.
How you process this particular advice depends a lot on your personal, social, and economic situation. Some disabled youth desperately need more encouragement, acceptance, and financial security. But others really are too protected and coddled, treated like royalty. This can lead to some nasty shocks when you reach adulthood and have to deal with people other than your supportive parents, favorite teachers, and closest friends.
Remember that disability can make you in some ways more mature and resilient than others your age. But how others treat you as a disabled teen can give you distorted impressions about what your assets really are, and what it’s going to be like in everyday adult life.
5. Recognize ways you have privilege.
Being disabled exposes you to many kinds of barriers, prejudices. and discrimination. There are physical barriers like stairs. You may need help just to get out of bed, bathe, and dress every day. You may run into people who avoid you, or bully you. Despite legal protections like the Americans with Disabilities Act, you may lose employment opportunities because of your disability.
But other parts of your identity and background can also give you social privilege that may be hard for you to recognize because you're so used to them. This can include being White in a world where racism still has power, being male in a society where women are still at a disadvantage in many situations, being financially well where others have to struggle to pay rent, plan for the future, or even buy groceries.
It is entirely possible for a significantly disabled person to have more social capital than, for example, the caregivers, service providers, fellow students, and coworkers that are so often part of their everyday lives. Your place in society as a disabled person isn’t necessarily at the bottom or on the sidelines. And remember that how you treat others is as important as how they treat you. Empathy works in both directions and on many different levels. Being the only disabled person in the room doesn’t mean you are automatically the one with the least influence and standing, or the person who needs the most help and support.
It will be important when you meet new people and have to work with them, to understand that you are neither worse than them, nor better, just because of your disabilities.
Is this just a therapeutic exercise for adult disabled people? Or could advice and letters like these be of real use to disabled teens and young adults? Older people like to think that they have something to teach youth. But as teenagers, would we have listened if we had this advice? It may be impossible to know, but it's at least worth thinking about.
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Next issue, July 15, 2023.