A year ago in Disability Thinking: Defined By Our Disabilities?
Thursday, May 14, 2015
Wednesday, May 13, 2015
Choosing A Disability Charity
Dylan Matthews, Vox.com - April 10, 2015
I have been meaning to post something about choosing a disability charity or organization for quite awhile. I endorse the advice in the Vox.com article. For those interested in disability matters, I strongly recommend that potential donors and supporters consider the following:
Find out how organizations spend their money, and choose an organization with priorities and interests that match your reasons for giving. Think about what kind of work you want to support. For instance:
- Money, adaptive equipment, and direct services to individual disabled people and their families.
- Programs and facilities that serve groups of disabled people.
- Public education and awareness campaigns aimed at changing attitudes and improving social acceptance of disabled people.
- Organized advocacy for specific changes in laws, regulations, policies and practices that affect disabled people.
Consider giving to an organization concerned with all kinds of disabilities, not just one condition.
Think about whether you prefer to support a locally-foucsed, independent organization, or a more high-profile, recognized organization with a state or national scope.
Seriously consider giving only to organizations with disabled people on staff, in leadership, and on governing boards.
Look very critically at how organizations talk about and portray disabilities. Do they depict disability as a heartbreaking tragedy, a hellish existence, or as something manageable through thoughtful support, social understanding, and good policies? Ask yourself how you would feel about how organizations talk about people like you if you had a disability.
Finally, let me add a couple of thoughts on staff salaries and overhead. Full disclosure ... I speak from my over 20 years of experience working at a disability non-profit organization.
Obviously, you want to watch out for "non-profit" organizations that pay stunningly high salaries to executives, consultants, and even board members. On the other hand, it’s important to keep things in perspective and not relegate all charitable work to second or third-class status in the wider economy. If you care enough about something to want it dealt with effectively, then you should pay enough to attract talented people, and make it possible for them to stick with the organization. That means paying people enough for a decent living for themselves and their families. That goes double for disabled people who work at disability organizations.
In fact, an organizational budget that seems to be heavy on salary and overhead may not necessarily be wasteful. The costs of counseling, education, organizing, and advocacy, are almost entirely in salary and benefits, along with offices, supplies, and perhaps mileage reimbursement, (for home visits), for those staff. If you prefer your money to provide material benefits directly to disabled people, then look for organizations that do more direct services and administer “pass through” funds directly to individuals.
I strongly prefer organizations “by and for” disabled people. I like organizations that do a lot of advocacy, especially fighting for better policies and practices. I split my interest about evenly between responsive, plucky local groups and truly effective and innovative national organizations. These are my personal preferences, but I do recommend them to others as well.
Still, the most important thing is to decide exactly what you want to do in the disability cause. “Giving to the disabled” doesn’t have to be confusing, but it isn’t as simple as stuffing a dollar in a can, either.
Tuesday, May 12, 2015
Should We Help "Reform" Social Security Disability?
Rand Paul: Advocates for the Disabled Should Help Brainstorm Ways to Cut Social Security Spending ... Kinder, gentler, cheaper (maybe).
David Weigel, Bloomberg Politics - May 12, 2015
I don’t for a minute believe Sen. Rand Paul really wants to reform Social Security Disability in any way a disabled person would like. He’s been trafficking for the last few months in the worst kind of divisive rhetoric about people who are and aren’t “truly disabled”, and philosophically, I suspect he just doesn’t think government should be giving disabled people money at all.
Eschaton’s take on this is pretty straightforward, and I pretty much agree with him.
That said, I also agree in a very narrow and limited way with Sen. Paul when he says that any reforms to Disability should happen with input from disability advocates. I don’t know if he’s aware of the phrase, “Nothing about us without us,” but that’s one way of looking at what he’s saying here.
In fact, it seems to me this is one of the big reasons why disability program reforms in the UK went sour. The major reason of course is that it was motivated most strongly by the Tory government’s drive to cut spending, and also by a strong dose of the same kind of ableism Sen. Paul has been peddling, (see “truly disabled” above). But I suspect it was even worse because there was little or no input from the UK disability community about what changes they would actually like to see in their disability support programs.
The thing is, we have ideas, and no, they don’t consist only of “more money please." We may not be as concerned with saving money and obsessed with catching cheaters as conservatives seem to be, but we do have ideas about how Social Security Disability can help foster greater independence and financial self-sufficiency. If anyone is really, truly concerned about bending the curve on Social Security Disability costs, they might try being patient about it, limiting their expectations, draining the venom out of the conversation, and asking disabled people what would work best to help us become more independent.
As it happens, there is going to be a Twitter Chat on Social Security Reform on June 1 at 1 PM Eastern, using the hashtags #SocialSecurityReform and #CareerACCESS. It is organized by disability advocates, and will probably be a good opportunity to “brainstorm” ideas and see what others are thinking. The National Council on Independent Living Annual Conference will also include a forum on Social Security Reform.
On the other hand there's always a chance, a pretty good one actually, that Sen. Paul and his colleagues just want to beat up on poor people some more, especially the ones they don’t immediately understand, like people with hidden, ambiguous, harder to pigeonhole disabilities.
That doesn’t mean we shouldn’t offer real, good faith ideas when we have them. I think we should, not to make it easier for Rand Paul to bully disabled people, but sometimes good policy cam grow out of dung.
On the other hand there's always a chance, a pretty good one actually, that Sen. Paul and his colleagues just want to beat up on poor people some more, especially the ones they don’t immediately understand, like people with hidden, ambiguous, harder to pigeonhole disabilities.
That doesn’t mean we shouldn’t offer real, good faith ideas when we have them. I think we should, not to make it easier for Rand Paul to bully disabled people, but sometimes good policy cam grow out of dung.
Monday, May 11, 2015
Photo Of The Day
It’s shaping up to be a busy catch-up day, and I’m still in recovery mode, so just a photo today. I haven’t reblogged photos as often lately, but I couldn’t resist this one.
From the fencing, man. fencing. Tumblr blog, via Just Rollin On.
Sunday, May 10, 2015
Weekly Reading List
I have decided to start another weekly posting tradition, to go with the "Weekly Wrap-Up" and "Tweets Of The Week." I’ll call it "Weekly Reading List.” Each Sunday I will post links to disability-related articles I read over the previous week, but didn’t have occasion to post about. I’ll keep the comments to a minimum, and the list size manageable. I hope you all enjoy the new feature.
Here is this week’s list:
Jason Harris, Jason’s Connection - May 7, 2015
I like how Jason takes a broader view of what “inspirational” actually means and why it seems to be so popular for all sorts of topics, not just disability.
David Keane, Daily Mirror - May 6, 2015
There is something about accessible parking that makes it grounds for confrontations that are all out of proportion to it’s actual importance.
Beth Haller, PBS Media Shift - May 8, 2015
The end of the moldy, smelly old MDA Telethon as a teachable moment for journalists.
Alana Semuels, The Atlantic - May 1, 2015
It’s good to see a serious article on long term care, specifically non-institutional, in a mainstream publication.
Alex Abrami, Burlington Free Press - May 9, 2015
I like the tone of this fairly by-the-numbers disabled athlete story about an amputee in my area. It’s uplifting without being sentimental.
Weekly Wrap-Up
Monday, May 4, 2015
Tuesday, May 5, 2015
Wednesday, May 6, 2015
Thursday, May 7, 2015
Friday, May 8, 2015
Saturday, May 9, 2015
Saturday, May 9, 2015
Poly Sci For Disabled People - Part 3: Government and Bureaucracy
This is the third in a series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.
At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.
Take these thoughts for what they are, ideas to chew over.
Part 3: Government and Bureaucracy
- Because so many of our support services come directly or indirectly from government, we tend to blame “government” in the broadest sense when things aren’t going well, or when we feel humiliated by the systems that are supposed to support us. Some of the most anti-government people I have met are people with disabilities who rely on government for their everyday well-being.
- When bureaucracy becomes frustrating, we may look towards more private solutions … such as private schools, charities, and religious organizations. These all have a role to play, and can help keep larger, more established programs, including government agencies, on their toes.
- These different directions also coincide with some of the major mainstream political parties and philosophies commonly debated. Conservatives and Republicans tend to distrust government solutions and hold up businesses and private charities as better avenues to meet human needs. Liberals and Democrats tend to view government approaches as more likely to do what needs to be done consistently, and to remain accountable to citizens.
- It is important for disabled people to evaluate the role of the government and private sectors in terms of which is best equipped to meet disability-related needs reliably, consistently, for everyone ... not just here and there or for a lucky few who make the right connections.
- Probably the most common model in the United States is disability services provided directly by local, private not-for-profit organizations, funded and overseen by state or federal programs. It’s a hybrid public / private model with both advantages and disadvantages. One of the disadvantages is that it is easy to become confused about who, exactly, is responsible for good or bad services, and who, exactly, we should be talking to to make changes.
- It is also important to think about the limits of the for-profit business model for providing vital services. Disabled people are equally valuable as human beings and citizens, but our disability-related needs aren’t always … or even often … equally profitable. Someone is always coming up with new ways to make meeting human needs "pay off” in the conventional sense, but it rarely works out as well as planned, and in the end, people on the receiving end tend to be left holding the bag, without backup.
- Another reason disabled people sometimes turn against government programs is that even when they try to do the right things, they tend to do them in top-down, impersonal, ham-fisted ways. Sometimes that’s unavoidable. Closing large institutions and sheltered workshops is going to be traumatic for some disabled people and their families no matter what. However, disability policies do better when they are developed under the guidance and leadership of disabled people.
Friday, May 8, 2015
Apple Followups
Max Plenke, News.Mic - May 4, 2015
Also of note, well-deserved recognition for Apple’s VoiceOver, just one of the many accessibility features installed standard in all Apple devices.
Buster Hein, Cult Of Mac - May 6, 2015
I’m honestly not on Apple’s payroll. It’s just that I’ve been using Apple things since the late ‘80s, and I’ve met many disabled people who swear by their accessibility tools.
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Thursday, May 7, 2015
Stannis & Shireen
Sunday’s episode of Game Of Thrones (Season 5, Episode 4) included a surprisingly tender scene that moved me as a disabled person ... specifically as someone who grew up with disabilities from childhood.
The scene involved Stannis Baratheon, one of the contenders for the Iron Throne of Westeros, and his daughter Shireen, who’s face is deeply scarred by Greyscale, a deadly disease she caught as a young child. In the medieval culture of the show, Greyscale is viewed as dangerous and shameful, something like leprosy, and Shireen does spend most of her time all but hiddden away in her chambers. On Sunday’s show, she asks Stannis:
“Are you ashamed of me, father?”
“Are you ashamed of me, father?”
I wish Stannis had started with a simple, “No.” Still, his reply was touching.
Stannis tells Shireen how a Dornish trader gave him a doll to give her when she was a newborn. The doll was contaminated with Greyscale, and she contracted the disease before this could be discovered. Stannis continues:
"I was told you would die, or worse, the Greyscale would go slow and you’d grow just enough to know the world before taking it away from you. Everyone advised me to send you to the ruins of Valyria to live out your short life with the stone men before the sickness spread through the castle. I told them all to go to hell."
"I called in every maester on this side of the world. Every healer, every apothecary. They stopped the disease and saved your life. Because you did not belong across the world with the bloody stonemen. You were the Princess Shireen of House Baratheon. And you are my daughter."
I read several “special needs parent” blogs, and this speech sounded familiar. There's a distinctive combination of obstinacy, pride, and a tinge of sadness. Obstinacy in a refusal to give in to perceived pressures to "give up on" a disabled child, pride in being a disabled child’s champion, and sadness at what the child has had to endure, with possibly some deeply buried parental guilt as well. As in real life, I have mixed feelings about these reactions. It’s hard to process the idea of being in any way a disappointment or source of regret for one’s parents, even if it’s layered over with love and devotion. Also, I noticed that Stannis' speech ends up being more complimentary of him than of Shireen herself. He never did directly answer her simple question.
On the other hand, I much prefer Stannis’ reaction to what we saw last season on the same show, in which Tyrion Lannister’s father, Tywin, finally revealed his true feelings. Like Stannis, Tywin “accepted" his little person son as part of the family, but grudgingly, more out of a sense of obligation than of love. Tywin is ashamed of his son Tyrion, and he admits to Tyrion’s face that he’d have preferred to drown him in infancy, but couldn’t "because you're a Lannister of Casterly Rock.” It parallels Stannis' declaration, but out of Tywin’s mouth, it rings hollow, a twisted form of family pride that Tyrion, for one, could do without.
The way parents accept their disabled children is subtle, and not always easy to assess from the outside. “Game Of Thrones” is remarkable in how it examines life with many kinds of disabilities. It also gives remarkable insight into the many ways families deal with disabilities.
Side note:
According to this Facebook post, the actress who plays Shireen Baratheon has a disabilitty of her own, Osteogenisis Imperfecta. I wonder how her real life experience enriches her portrayal.
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Wednesday, May 6, 2015
Poly Sci For Disabled People - Part 2: Rights, Not Privileges
This is the second part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.
At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.
Take these thoughts for what they are, ideas to chew over.
Part 2: Rights, Not Privileges
- As disabled people, we sometimes get confused about the difference between rights and privileges, between accommodation and favors.
- Because equality for disabled people usually requires being treated differently, you will sometimes hear accessibility, accommodations, and supports described, in a mean way, as “special privileges.” The idea is that things like handicapped parking, workplace accommodations, and financial supports make our lives easier than everyone else’s.
- You have the right to accessibility and individual accommodations to your disability. These are not privileges you have to earn. They are not favors you have to rely on kind people to do for you. They get you closer to equality, not superiority or higher privilege.
- You earn human kindness and friendships by being a nice person. You may find you can earn an easier life, including some luxuries, by hard work and ingenuity. But you don’t have to earn your continued existence, or equal respect and opportunity.
Tuesday, May 5, 2015
This Old (Accessible) House
Eliza Mills, Marketplace - May 1, 2015
It’s good to see that This Old House is going to deal with home accessibility again. I have a vague recollection that they did some shows like this sometime back in the early ‘90s.
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