Who's Disabled?

People sometimes ask, "Is it okay for me to say I'm disabled?" What do they mean? A variety of things, I think:

• They have some condition that's in the ballpark of disability, but they have struggled personally over whether they themselves want to identify as disabled.

• They view themselves as disabled in some way, but worry that other disabled people won't accept that, or that they will be accused of "appropriating" disability identity and culture.

• They think that if they refer to themselves as "disabled", their friends and families will be sad or disapprove, or worse ... believe they are faking in order to gain some kind of advantage or benefit.

• They are focused on one of the more narrow, specific definitions of "disabled," such as qualifying for Social Security Disability, being entitled to a "handicapped parking" permit, or being covered under the Americans with Disabilities Act.

• They take the word "disabled" very literally, to mean unable to do anything. From this point of view it can seem both inaccurate, (everybody can do SOMETHING), and discouraging ... as if calling yourself disabled is not only descriptive, but predictive.

I've thought about it a lot, and here is the definition of disability that makes the most sense to me. It's a personal definition, not a legal or bureaucratic one:

If you have a physical or mental condition that you have to think about and plan around every day, then you are disabled.

This definition encompasses any physical, mental, cognitive, and sensory impairments. I personally don't include temporary impairments, impairments that are seamlessly adapted, (like glasses for nearsightedness), or ordinary variations in personality, talent, and physical makeup.

Any thoughts?

Disability Blogger Linkup

It's time for the September, 2017 Disability Blogger Linkup! If you are new to this, click here to see previous Disability Blogger Link-Ups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it's on. Also, to make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, October 13, 2017.

Monthly Reading List

It has been a pretty good month for disability reading ...

‘I am a hard worker’
Terrence McCoy, Washington Post - August 27, 2017

The Washington Post has done a series of articles about "disability" recently ... focused on disability as it relates to employment and Social Security benefits. Most of the articles have been awful, full of vile stereotypes about disabled people, low income people, and people in certain regions of the U.S. They have also perpetuated politicized and easily debunked myths about SSDI and similar benefits. However, this latest article at least, and at last, tries to convey the web of barriers many disabled people encounter when they try to get jobs ... from the classic "work disincentives" built into benefits systems, to intersecting factors like poverty, poor education, and simply the way today's economy and job markets are structured. More pieces like this would be ... better.

Florida Demands Parents Call Their Kids 'Limited' or Lose Health Care
David Perry, Pacific Standard - August 28, 2017

This article highlights some pretty profound contraditions in thinking about disability ... so many and so hard to discuss that I will probably have to blog about it separately. On one level, it is about straight up dishonesty and corruption in Florida disability services. On another level, it's about the unnecessary insensitivity and cruelty that creeps into disability service bureaucracies. On a third level though, I think it also calls on all of us to revisit our fundamental understanding of disability, maybe for a third or even fourth time. I'll try to explain what I mean at some future date.

My IEP Gave Me PTSD: A Student's Perspective
Mandy Ree, Ravishly - August 18, 2017

This piece gave me some of the same feelings as the first one. There is a straightforward story about services that are supposed to help disabled kids being dispiriting and traumatic for them. At the same time, there is probably a deeper story to be picked apart about how Special Education got to this point. My take is that the increasingly pedantic coldness of IEPs is at least partly a result of two praiseworthy efforts: 1. Expecting Special Education to include more 'education,' as traditionally understood, and 2. holding Special Education accountable for educating disabled kids. But we haven't figured out how to get tough in these good ways without making the whole process mean and scarring for actual disabled kids.

What Is Identity-First Language, & Should You Use It?
J.R. Thorpe, Bustle - August 9, 2017

This goes into my growing collection of especially good explanations about the differences between Person-First and Identity-First language. This one does three things I always look for in this kind of discussion. 1. It gives a fair hearing to Person-First langauge, and doesn't simply label it as an ableist plot of non-disabled meanies. 2. It addresses head on the idea that even having these discussions about language might be a bit trivial. And 3. It reinforces the call to let disabled people ... meaning each disabled individual ... choose the language they prefer at any given moment in their lives.

'You don't break a promise you give to yourself'
Cara Chapman, Plattsburgh Press-Republican - August 9, 2017

I added this article from my hometown paper because it both is and isn't a "disability story." On the surface, it's about a police officer's perseverance and grit in the face of a bit of bureaucratic absurdity. It's also about a good boss, the Police Chief, who does seemingly all he can to help someone return to work after a period of medical leave. He's even willing to go on record saying he objects to the barriers the officer faced. At the same time, underneath the surface, it could and maybe should have been a story about employment and people with disabilities, the ADA and reasonable accommodation, and about how disability discrimination often hides in fine print and procedures rarely questioned.

Disability Communities ... Followup

Last month, I blogged about the idea that there are actually several different "Disability Communities," based on the major different approaches disabled people have to their disabilities. In that post, I proposed 5 of these communities or approaches, something like this list:

Activism
Culture
Achievement
Assimilation
Cure

Note: I have decided to rename "Bootstrapping" and call it Achievement instead, because "bootstrapping" is a little too dismissive or judgmental. I am also simplifying "Cure Questers" to just plain Cure.

Let's look at these categories in a little more detail:

Activism - Examples:

◎ Personal participation in activism
◎ Problems of disability are mainly social and structural, and therefore correctable
◎ Activism is a valuable and important way of addressing disability issues
◎ Disability activism is urgent, exciting, empowering
◎ Hope for better future through better disability policies & services

Culture - Examples:

◎ Regularly use and/or produce disability-oriented media
◎ Enjoy discussing & exploring disability as a social identity
◎ Disability is a culture, a personal and collective social identity
◎ Disability identity is a source of personal & collective pride
◎ Hope for better future by combating ableism and promoting disability pride

Achievement - Examples:

◎ Focus on self-improvement, education, training
◎ Focus on getting a good job
◎ Pursuit of maximum achievable financial independence
◎ Value maximum achievable practical independence, self-determination
◎ Hope for better future by personal achievement and proving disabled peoples' capability

Assimilation - Examples:

◎ Goal of achieving mainstream social acceptance
◎ Social acceptance is signaled by others ignoring or looking past disability
◎ The ideal is a "normal life" in which disability is insignificant
◎ Disability is an inconvenience, a challenge, an obstacle ... not really an identity
◎ Hope for better future by making non-disabled feel at ease with disabled people

Cure - Examples:

◎ Goal of curing or substantially reducing your disability
◎ Disability is mainly a personal health and fitness issue
◎ Activism focused on medical treatment or prevention of specific disabilities
◎ Fundamentally dissatisfied with having disabilities
◎ Hope for better future by preventing disabilities

The original post was just table setting for a bigger point, which is that I believe most disabled people are unique blends of these approaches. Mapping out how each of us invests in these approaches can reveal a lot about what kinds of disabled people we are. At the same time, I think it can also help make sense of the frequently huge differences and divisions in the disability community as a whole.

I'll start with myself.

I wanted to make some kind of graph or chart to illustrate where my own disability thinking sits among these different approaches to disability. So, I gave myself 10 "points" to distribute among the five approaches ... the more heavily invested I believe that I am in each category, the more points I allocate to it. Here is what I came up with:

Activism: 4 - My main interest is in activism, and my overall view of disability is that the key to better life for disabled people is better disability policy. Also, I tend to like disability activists, and discussing and campaigning for disability issues is stimulating and exciting to me.

Culture: 3 - I am also interested in, and a small producer of disability culture. I absolutely believe that disability is an identity and that there is a real disability culture. However, this interest is still rather new to me, and I still occasionally find myself feeling skeptical of the importance some of my friends and colleagues attach to issues of identity, language, and representation.

Achievement: 2 - I care about my own success, not just as a person, but as a disabled person who can be an example to others. At the same time, the brand of disability activism that centers on conventional markers of success leaves me cold. In the end, I don't really think that a few splashy individual triumphs does much to change the social status of disabled people in general.

Assimilation: 1 - I care a great deal about having freedom, access, and formal integration, but I'm not that interested in whether I am fully assimilated and viewed as "just another guy" by non-disabled people. This is partly because I don't think that totally blending in is really possible for me, and partly because I've always been a bit of a loner, happy to be set a little apart from the crowd, whether or not it's because of my disability.

Cure: 0 - There is no medically or practically meaningful cure or therapy imaginable for my particular disabilities, which is probably why I have never been the least bit interested in such a thing. Meanwhile, there are things that can and should be done in society, things we already know how to do, that would make life better for disabled people.

And here's a graphic representation of all that:

What would your chart look like?

Next month, I plan on finishing this three-part series of posts by using this formula of sorts to look at how my profile has changed over the years, from my youth, to young adulthood, to the present day me. I may also try to chart out some other kinds of disabled people and disability organizations that have very different profiles, and emphasize very different approaches to disability.

Observations:

My instinct is that the majority of disabled people are mostly invested in a combination of Achievement and Assimilation, with a bit left over for Activism and Cure in specific circumstances ... such as the threatened loss of health care (Activism), or the prospect of significant pain relief from surgery or medication (Cure).

I would guess that the overall investment in Culture has grown a lot just in the last 10 years or so. Until recently, appreciation of disability culture was almost entirely restricted to people with a background in academic cultural theory, the kind of mindset and analytical skills you pick up in the liberal arts college experience. However, I think that social media has created much more direct, intuitive, and accessible entry points, opening up interest and participation in disability culture to a much wider audience.

For a long time, the Achievement approach to disability was synonymous with Activism. The goal of disability activism was almost entirely about ensuring equal access to education, employment, and participation in conventional middle class American life. This is changing. Disability activism is more ideological now, (not necessarily a bad thing!), more engaged in existential issues ... like long term care and eugenics ... and just a little less with public school inclusion and employment rates. These are still important, but no longer exclusive, unquestioned goals.

The most broadly shared, easy to understand approach is probably Assimilation. It's the one approach most evenly shared by disabled AND non-disabled people. It's message ... "Just treat me like everyone else," is simple and relatable. It has for a long time also been considered the most easily accomplished. However, in recent years, the disability community has become more skeptical of the prospect of achieving true assimilation and social acceptance. Also, some question the value of assimilation itself, as wholehearted embrace of disability culture becomes a more viable, fulfilling alternative.

This rubric of 5 approaches or communities seems like an especially good way of clarifying the fundamental differences between disability organizations as well as individuals. Those of us engaged with the disability community can probably identify by name organizations that exemplify Activism, Achievement, Assimilation, and Cure. Oddly, I can't think of a disability organization that belongs squarely in the Culture approach and community. Am I missing something, or is this actually an open slot for some new disability organizations that don't yet exist?

As always, your questions, thoughts, and critiques are most welcomed. And if you feel like sharing how you see yourself in relation to these approaches, do share!

Disability Blogger Linkup

It's time for the August, 2017 Disability Blogger Linkup! If you are new to this, click here to see previous Disability Blogger Link-Ups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it's on. Also, to make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, September 13, 2017.

Monthly Reading List

Five disability-related items I read, (or heard, or read), in July, 2017:

NOT YOUR OOMPA LOOMPA
Rebecca Cokley, Medium - July 22, 2017

Somehow I missed out on the meme Rebecca is talking about here. Now that I've seen it, I agree it's not only gross, it's a prime example of how disability slurs are still seen as semi-acceptable even within otherwise progressive communities.

5 Ways The U.S. Is Still Horrible At Handling Disabilities
Jordan Breeding, Cracked - July 24, 2017

This article is notable because it's from Cracked, of all things, and therefore aimed at a particular kind of audience. It's a good beginning answer to a specific question ... why are disability activists angry. These are more than unfortunate inequities. They are outrages that most non-disabled people, and also a good many disabled people, might not know about at all.

Episode 36: The Accessible Stall and Ellen Seidman
Emily Ladau and Kyle Kyle Khachadurian, The Accessible Stall - July 25, 2017

I have mixed feelings about this episode of The Accessible Stall, because I have mixed feelings about Emily and Kyle's guest and her blog. Overall, they have an important, engaging discussion that can help lessen the estrangement that seems to exist between "special needs parents" and disabled adults. However, I found myself wanting to jump into my iPhone and ask Ellen some followup questions and raise a topic or two that didn't come up. It's worth a listen though, and just the kind of complex, difficult discussion we need more of in disability podcasting.

Finding My Amputee Brethren
Ashley Shew, Nursing Clio - July 27, 2017

This is a lovely testament to the power of accidental peer connections between disabled people.

Finding Your New Accessible Way Of Doing Things (ep. 99) #DisabledYouTuber
Rebelwheels NYC, YouTube - July 28, 2017

Michele's latest video should probably be required viewing ... or at least recommended ... for people with new disabilities. What she's talking about is fundamental to living positively with disabilities.

Disability Communities (Plural)

Note: I am just about bursting with thoughts and feelings about the death / hibernation of the effort to repeal Obamacare, but it'll take me at least a few days to write something coherent. So, I'm going ahead with this mostly off-topic post I already have teed up.

---

Most of my disability thinking lately has been about politics and activism within the disability community. And one of the starting points for my thinking about this is a growing realization that there is actually more than one "Disability Community."

This is not an original idea. Plenty of people have observed before that there are different sub-groups of disabled people. Some are defined by the type of disabilities they have, some by age, or which generation they represent, others by overlapping cultural, political, religious, or gender identities. In terms of philosophy, the most frequently cited distinction is between the Medical Model and Social Model of explaining and approaching disability. This is well covered territory.

I would like to suggest another way of subdividing the broader disability community. It's similar to the medical and social models, but instead of two categories, I want to propose five. I am talking about people with the same variety of disabilities, facing basically the same menu of problems and barriers, but whose different approaches to them make them sortable into a handful of distinct "disability communities."

Here is my list ... still a bit sketchy:

Activists ... Disabled people who not only practice activism, but view it as central to their idea of disability in society.

"Activists" believe that the key to a better life for disabled people is to make fundamental changes in disability policy. But activism is more than a means to specific ends. For activists, it is also an outlook that structures their understanding of themselves and their disabilities.

Culturalists ... Disabled people who are interested in the social meanings and interpersonal dynamics of disability.

Culturalists view disability as an identity that can be studied, ignored or represented, disparaged or promoted, despised or appreciated. Their deepest interest is in solidifying disability as a respected and appreciated social identity, a culture, and a community ... with internal pride and external recognition.

Bootstrappers ... Disabled people who focus on proving their worth by achieving traditional markers of social and economic success.

These typically include a quality education, career success, financial independence, family, and the material components of a middle class lifestyle. Bootstrappers seek these things not only to cement their independence, but to earn a kind of approval that they hope will outshine their disabilities.

Assimilators ... Disabled people who view their disabilities as unimportant inconveniences, and strive to be viewed as normal or ordinary by the mainstream, non-disabled community.

This is never quite as simple as disability denial. It's more of a craving or preference for normalcy, even anonymity. It is also the mindset of the many disabled people who have no deep interest in the disability experience, and view disability exclusively in practical terms.

Cure Questers ... Disabled people who primarily view disability as a medical condition or disease to be cured, fixed, or overcome.

They may or may not be well adjusted to their disabilities in the everyday sense, but either way, their higher commitment is to eliminating disabilities, for themselves and / or for others.

Which of these communities do you feel like you belong to? Do these categories make sense? Have I missed one?

Very few of us exist in only one of these communities, though most of us probably favor one or two pretty clearly over the others. In my next post I plan to add some details and examples to each description. I'll also get out my drawing and charting tools, and experiment with some Venn Diagrams to explore how our various disability communities overlap.

Disability Blogger Linkup

It's time for the July, 2017 Disability Blogger Linkup!

If you are new to this, click here to see previous Disability Blogger Link-Ups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not the main page of the website it's on.

To make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you have any trouble making it work, or any questions, feel free to email me at: apulrang@icloud.com

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, August 11, 2017.

Monthly Reading List

This is my first attempt at a monthly reading list. I plan on making it pretty much the same as the Weekly Reading Lists of the past, only monthly. First, a word about selection criteria ...

The five articles on each list won't be "the best" disability articles I've read, though I'm not likely to post items I think are bad. My selections will be based on a combination of quality, relevance for the month just passed, and content that happens to interest me.

Now, here's the list for June, 2017. All of them are about one topic ... the House and Senate health care bills, especially their implications for disabled people who rely on Medicaid.

Medicaid is My Lifeline
Erin Hawley, Easterseals Blog - June 13, 2017

Erin briefly and efficiently describes in detail how she uses Medicaid-funded home care, and links that to current proposals to cap and cut Medicaid.

Cerebral Palsy Didn’t Stop This College Junior. Obamacare Repeal Might
Jonathan Cohn, Huffington Post - June 17, 2017

This article caught me by surprise. It starts out as a fairly typical story of an inspirational disabled person, almost an inspiration porn story. Then it pivots to show how stories of disability success and virtue also depend on programs like Medicaid that require activism and political support.

Medicaid is a Disability Rights Issue
Erica Mones, Running with Crutches - June 19, 2017

Erica's blog post directly confronts conservative misconceptions about Medicaid ... especially the kinds of casual statements disabled people hear from friends and relatives who should know better, but don't.

Why Disability Rights Activists Stormed Mitch McConnell's Office
s.e. smith, Rolling Stone - June 23, 2017

s.e.'s Rolling Stone article connects all the important dots on this issue ... explaining the widely misunderstood links between disabled people, Medicaid, home care, and the struggle to stay out of institutions.

I'm a Republican and I depend on Medicaid
Jonathan Duvall, Pittsburgh Post-Gazette - June 24, 2017

I'm not going to suggest that the same arguments against Medicaid caps and cuts have more validity coming from a Republican, but they may carry a little more weight for conservatives, and with people who speculate that opposition to these proposals is partisan in some invalidating way. Also, I appreciate Jonathan making the point that far from being a ticket to idleness, Medicaid enables disabled people to work. In fact, it's usually a prerequisite to even attempting to work.

Blog Restart

It has been well over a month since I last posted here, and that was a Disability Blogger Linkup ... requiring no original writing from me. So what's going on?

Basically, I've gotten out of the habit of blogging, right when there's more important stuff by far going on in the disability community than there was when I started disability blogging and posted every day. The time I used to spend blogging I'm now putting into #CripTheVote, and into social media work for my local Center for Independent Living. That means a lot of face-booking and tweeting, which exercise similar, but also quite different writing and thinking skills.

Also, I have recently realized that I'm running low on new thoughts, ideas, and realizations about disability. When I started disability blogging, I had a lifetime of material to catch up on. Now, when I think I should really get back to blogging, I find I'm repeating myself.

Which is not to say that I don't have new things to say, or that I'm never going to revisit old topics. But these are going to come less frequently, and when I do blog, I hope what I write is better, more substantial, than some of the fleeting thoughts I used to push out on the daily. In other words, quality over quantity.

So here's the plan ...

I will do a monthly blog post on a disability topic I am thinking a lot about. For the moment, let's say the last Friday of each month. I will also post a Monthly Reading List on the last day of each month, similar to the Weekly Reading Lists I used to post every Monday. I will do a Disability Blogger Linkup on the 2nd Friday of each month. And that's about it, unless I feel the burning need to say something too long to tweet and can't wait for the monthly post.

In between, you can follow my Twitter feed, @AndrewPulrang, and the #CripTheVote hashtag. I share or post something in those "spaces" almost daily.

Thanks everyone for reading and commenting!