Disability Thought Of The Week: Advocacy or Activism?

At some point over the last couple of years, I started operating with what I think are my own definitions of the words “advocacy” and “activism” in the context of disability.

“Advocacy,” to me, is strategizing and arguing for your own individual needs and goals as a disabled person, while “Activism” involves similar activities, but in pursuit of the needs and goals of all or a portion of the disability community. This distinction is usually defined by the terms “Self-Advocacy” and “Systems Advocacy.” I just think calling them “Advocacy” and “Activism” is simpler and clearer.

And understanding the difference is hugely important! “Advocacy” and “Activism” are both valuable, even essential activities, for disabled people and for the disability community, but they aren't the same thing. They have different (though related) goals, and each calls for different (though related) approaches. In fact, I think that a lot of the problems of individual disabled people, and of the disability community. can be traced to using Activism strategies in Advocacy, and vice versa.

When do you do Advocacy, and when is it time for Activism?

Monthly Reading List - March, 2018

Monthly Reading List

Five disability-related items I read in March, 2018:

The Stories We Don’t Tell: My Mom On Raising An Autistic Child And Why She’ll Never Write About Me
Sarah Kurchak, Medium - March 6, 2018

This is a must-read for anyone who doesn't understand why so many disabled people don't like "special needs parent" memoirs. Obviously, parents of disabled children should be able to write about their experiences if they want to. But they absolutely must at least consider how their kids would take what they plan to say, and assuming they'll never read it or understand it just isn't good enough, regardless of their disability. That goes maybe double for people who think about reading such memoirs.

Disabled People Can Have Eating Disorders, Too
Micaela Evans, Teen Vogue - March 2, 2018

The essential point of this piece applies to many health conditions beyond eating disorders. Doctors often don't function at their highest capability with disabled patients because they have a hard time distinguishing between our underlying disabilities and more immediate medical conditions. This confusion is probably the number one barrier disabled people face in getting good, regular medical care.

Record snow creates 'nightmare' for people with accessibility issues, says advocate urging better clearing
David Bell, CBC News - March 5, 2018

There's nothing special about how the article is written. I am including it because winter weather isn't mentioned often enough in discussions of physical accessibility. Obviously, it only directly concerns disabled people who happen to live in places that have snow and ice. But where they do appear, the barriers are profound and chronic. And unlike stairs and curbs, removing snow once doesn't do the job. You have to do it constantly. On the other hand, snow removal isn't actually that difficult in any given spot, compared to building a ramp. So there's a lot to discuss!

Stephen Hawking, Wheelchairs, Death. and Freedom
Karen Hitzelburger, Claiming Crip - March 15, 2018

On balance, I found most of what I read about Stephen Hawking in the wake of his death pretty decent. The only real exception was the recurrent tendency ... for some writers seemingly a compulsion ... to make basically the same faux-insightful remark about Hawking being "free" of his wheelchair now that he's dead. Karen does a good job here not just of calling out the practice, but explaining why so many disabled people really loathe it. As strongly as we feel about it, it's not something that's immediately obvious to everyone ... maybe to most people ... so it deserves a good explanation like this one.

The Overlooked History of Black Disabled People
Vilissa Thompson, Rewire News - March 16, 2018

There's an obvious reason to pay attention to the history of black disabled people. It's a matter of fairness and representation. But that almost implies that it's not an interesting topic on its own, which it is! Come to the subject for the justice of it. You'll stay because it's interesting.

Disability Thought Of The Week: Best Foot Forward vs. Radical Honesty

One source of misunderstanding and conflict within the disability community is an apparent shift in how we as disabled people try to portray ourselves.

20-40 years ago, the conventional wisdom was that disabled people who wanted to succeed personally and further the cause of disability acceptance should project an image of strength, competence, and calm. The idea was that discrimination and inaccessibility were outgrowths of an assumption that we were sick, incapable, and emotionally messy. By "proving ourselves" we could prove these assumptions wrong ... basically winning the argument against ableism by our example.

Now it is much more common for disabled people to be open about our physical and emotional difficulties, and more blunt and frank about the corrosive effects of ableism. The more common message now is more complicated than it used to be. Fundamentally, we still view ourselves as capable and competent, but at the same time we are more willing to say "All is not well!" ... sometimes personally, and certainly in the broader social justice sense.

There's really not that much of a gap between these two approaches. We've always been fighting ableism, and we haven't given up on the idea that we can be vibrant, happy, contributing members of society. The main difference is that we tend not to value projecting an idealized image anymore. We are a little more willing to say how we really feel, and how things really are, even if it confuses and upsets others.

It is a different approach though. You can hear hints of an almost generational divide in conversations about disability these days. It's the difference between "best foot forward" and "radical honesty" approaches to portraying disability to the rest of society. It may cause conflict, but I think the dialog, and the shift, is productive.

Disability Thought Of The Week: Guns

I am glad to see that based on what I’m reading, there seems to be a refreshing absence of mental health distraction and scapegoating in this weekend's "March For Our Lives" events.

Others have written well about why focusing on mental ill people ... or mentally incompetent, or autistic ... is bad, even from a pro gun control standpoint. It boils down to the fact that while many people who commit the most spectacular gun crimes at least appear to be “mentally ill,” people with mental illness are on average LESS likely to commit gun crimes. On top of that, the impulse to keep guns away from these folks is fueled mostly by unfounded but very deep fears and prejudices people have about mental illness. It's ableism masquerading as common sense.

In fact, I think this relates in some broader ways to how certain disabilities are still viewed in our society. Gun rights advocates and other instinctive conservatives tend to see a social problem like gun violence and look for answers in character. It feels more honest to them to blame the “bad people” who commit killings than to focus on guns, which to them is simply tools. They may or may not accept statistical evidence that the abundance of guns themselves shapes mass behavior, but in their moral universe, it’s all about individual character, personal decisions about Right and Wrong. On other hand, gun control advocates and instinctive progressives tend to look at social problems and seek technocratic answers, causes, and solutions that bypass personal character in favor of mechanical solutions that can make things better without having to make people better.

So here’s the problem for the disability community. Both conservatives and many progressives still basically view mental illness as at least partly about character. Not to the same extent perhaps, but there are a lot more shared assumptions between conservatives and progressives about mental illness than about most other issues. Prejudice against mentally ill people is, to some extent, “bipartisan.” So that makes it a tempting area of agreement where we might restrict guns, but only for a group of people with “all agree” we fear and, to some extent, despise.

Except that it looks like the young people of the "March For Our Lives," "Enough Is Enough" movement don’t share this misplaced focus on mental illness. Maybe it’s because the perpetrators of these school shootings are people they knew ... classmates ... so it’s harder to think of them as some kind of separate class or type of person. Maybe young people just have a better understanding of mental illness than their elders. They might even be savvy enough to recognize a deliberate red herring when they see one. Whatever the reason, it’s a modestly hopeful sign for the gun debate and the disability community.

Note: On Friday, Rooted In Rights posted several Facebook and Twitter items debunking the supposed link between mental illness and gun violence. They are well worth a look for further information.

Disability Thought Of The Week

When I started this blog in February, 2013, my goal was to post something every day. I pretty much did that for about three years, until my other day-to-day activities and priorities changed, and I switched to more occasional blogging. At the moment I am in a routine where I post something 2 or 3 times a month.

I want to try something different.

I want to start posting a short "Disability Thought Of The Week" each Sunday. These will be anywhere from a couple of sentences to a couple of paragraphs long, and no than that ... just brief samples of whatever is on my mind in my journey through disability culture and activism.

So the new schedule for Disability Thinking content will be:

Sundays: Disability Thought Of The Week
First Mondays: Monthly Reading List
Second Fridays: Disability Blogger Linkup
Fourth Fridays: Regular Blog Posts

As usual, all posts will be announced on Twitter and Facebook.

A Bit Of Fundraising

I have decided to take the plunge back into a bit of fundraising for the Disability Thinking website. In the out-of-pocket sense, it's a pretty low-cost affair, but not no-cost. And, if I take into account secondary costs like my time and the fact that I need to always have a working computer to keep the website going, I'm really subsidizing this whole thing right now out of my pretty limited personal finances.

Instead of going the Patreon route, at least for now I will be selling mugs and t-shirts, and also running a Ko-Fi site, where you can quickly and easily make small, one-time donations.

If I make some noticeable headway with these fundraising avenues, then I might consider getting back into podcasting, or maybe a YouTube vlog. We'll see how it goes! In the meantime, check these out ...

The graphic for these items is a circular word cloud derived from the Disability Thinking Blog, but you don't have to know about the blog to appreciate it. I think it's a nice way to get across the importance of words and ideas in disability culture and activism.

If you want to make a Ko-Fi donation, just click this icon:

Buy Me a Coffee at ko-fi.com

Note that the Ko-Fi button will be at the top and bottom of the sidebar menu on every page you visit, so it's easy to make a donation whatever you happen to be reading at Disability Thinking.

Disability Blogger Linkup - March, 2018

Welcome to the 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, April 13, 2018.

Monthly Reading List - February 2018

Five disability-related items I read in February, 2018:

'Our Lives Are at Stake.' How Donald Trump Inadvertently Sparked a New Disability Rights Movement
Abigail Abrams, Time Magazine - February 26, 2018

This is a sharp and unusually thorough overview of current disability activism. I’m not just saying that because I am in the article. Okay, a little bit because I’m named in the article. But it is the kind of article I would give a newcomer to disability rights, to give them a broad overview.

Being Disabled Is A Job
BeingCharis, June 14, 2017

The title alone is worth recognition. The blog post itself makes a great case for adjusting how we think about disability, work, social value, and money.

1st day of having a home health aide
Adventures In The Mandatory Smoothie Cleanse - February 25, 2018

The blogger is an online friend of mine. Her recent posts reflect the mixed feelings disabled people often have when they start using home care for the first time. It’s one of those times when we are confronted by the apparent contradiction between our can-do rhetoric and the reality that independence often means something slightly different for us than it does for other people, or than it used to mean for ourselves.

Why Black Disability History Matters
Vilissa Thompson, LMSW, Ramp Your Voice - February 27, 2018

February was Black History Month. As a white disabled person, I feel like any explanations I attempt, as to why conversations about race and black history belong in disability rights, are going to be either simplistic or overly intellectualized, and possibly wrong to boot. This feels like a much better, more authentic explanation that's both accessible and right.

What the Neurodiversity Movement Does—And Doesn't—Offer
Emily Paige Ballou, Thinking Person’s Guide To Autism - February 6, 2018

I find the "autism wars" between different understandings of autism are incredibly exhausting. Which is saying something since I am neither autistic myself nor do I have a close relative with autism. Imagine how it is for autistic people and, I suppose, their families too. This article goes a long way towards dismantling a lot of the heated rhetoric that tends to obscure the fact that "neurodiversity" is much more than a fringe theory, but is a valid ... possibly the most valid ... way of understanding autism.

Starting Somewhere

Have you seen this yet? Watch it now ... (TW for heavy drinking and bleeped profanity):

Judy Heumann and her fellow activists begin the Section 504 sit-in, paving the way for the passage of the Americans with Disabilities Act. Watch full episodes of Drunk History now: http://www.cc.com/shows/drunk-history/full-episodes Drunk History airs Tuesdays at 10/9c on Comedy Central.

Honestly, I didn’t come up with this topic just as an excuse to post and talk about this amazing Drunk History video about an important event in disability history, the Section 504 sit-in. As it happens, I have been thinking a lot lately about an often heard phrase in disability advocacy, “You have to start somewhere!” Then this skit aired on Tuesday it seemed to me like a perfect answer to why the phrase ... though technically true ... has become so irritating.

“You have to start somewhere” shows up a lot in disability activism and culture discussions in which one group of observers complain that a disability-themed movie, TV show, advertisement, inclusion activity, or awareness campaign isn’t good enough, and another group defends it because although it’s not perfect, “You have to start somewhere!” Basically, it’s about different factions within the broader disability community calibrating progress in very different ways. What’s groundbreaking for some is often old hat or even retrograde for others.

This problem relates to more concrete matters, too. Last week, the U.S. House of Representatives passed H.R. 620, a bill that would institute additional waiting and grace periods for businesses to comply with the Americans with Disabilities Act. One of the underlying premises of the bill is the notion that the ADA and accessibility standards are in some sense new, unusual things that business owners can’t be expected to know about by themselves. They need advance notice that they might be out of compliance, and then extra time to figure out what they need to fix it. They shouldn’t be punished for not having their act together on these newfangled regulations.

That’s where the Drunk History skit comes in.

The 504 sit-in was specifically about accessibility, non-discrimination, and creating a more modern, progressive cultural understanding of disability. And it took place in 1977 … 41 years ago. Now, I’m just old enough to have lived as a disabled person in a time when the ADA, disability rights, and cultural representation of disability were actually new things. In the late ‘80s and early ‘90s, we were, in truth, “starting somewhere.” But we can’t still be “starting somewhere” 41 years later, can we? Obviously, progress takes time. It took another 13 years after the 504 sit-in for the ADA to pass. But at some point, doesn’t the clock sort of run out on what’s considered “new” and “just starting?” Doesn’t the simple passage of time suggest that we eventually should expect a better understanding of disability to be widely shared and integrated into the fabric of “stuff people just know?” This then allows us to move ahead to the next steps, and the steps after those.

I think one problem is that a segment of the disability community always views disability matters of all kinds as “new,” because a portion of the disability community is always going to be made up of newly disabled people and families of newly disabled people. It’s all legitimately new to them. That’s understandable. But eventually, it has to stop being new, even for newcomers. And knowing the actual history of these movements and ideas is key, because each new generation of disabled people is not, in fact, the first to experience disability or think up the idea of disability rights. It may seem that way to some of us, but that’s what looking around you, talking to other disabled people, and looking up a bit of history is all about.

It’s amazing that of all things, “Drunk History” has given us such a great opportunity to remind ourselves that the disability rights movement is well past “starting somewhere.”

Disability Blogger Linkup, February, 2018

Welcome back to the 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, March 9, 2018.