Sunday, May 11, 2014
Monday, May 12, 2014
Tuesday, May 13, 2014
Wednesday, May 14, 2014
Thursday, May 15, 2014
Friday, May 16, 2014
Saturday, May 17, 2014
Sunday, May 18, 2014
Saturday, May 17, 2014
"American Girl" Doll Petition Still Needs Signatures
I first saw Melissa Shang's Change.org petition to add a disabled “American Girl” doll back in late December. I checked in again in January, at which point the petition needed 26,000 more signatures to reach its goal. As of today, it still needs about 7,300 more.
As far as I can tell, Mattel, the “American Girl” brand’s manufacturer hasn’t committed to adding a disabled doll to its collection, although a spokesperson praised Melissa’s efforts.
I’m sure they get tons of very specific requests, since the whole point of the “American Girl” collection is to represent American girls of all kinds, from all walks of life. For that same reason, though, I don’t understand why they haven’t been more decisive about it. Maybe when Melissa’s petition reaches its 150,000 signature goal they’ll use the occasion to make an announcement.
A Fine Turn Of The Phrase
I don’t know why, but I just really love this description:
"Do you know the feeling of when it is like every step is wading through treacle? You don't need a physical disability to know how that feels. Combine that with a left leg acting like a bung shopping trolley wheel and a left arm that is twisted like a pretzel and it really is a pretty picture.”
She Types Things - April 30, 2014
Photo Of The Day
From the Tattered Obsidian Tumblr blog, via Wheelie Wifee.
I highly recommend reading what the Tattered Obsidian blogger has to say about this photo. It relates to the post I'm working on about "loving" or appreciating our disability-related devices, rather than hating or merely tolerating them.
Friday, May 16, 2014
Work In Progress … I Love My Ventilator
Do you love your wheelchair? Or, your scooter, crutches, walker, or cane?
I love my ventilator. “Love”, of course, might not be the right word, but it’s close enough. I feel good about using it. I feel a bit insecure when it’s not accessible to me for awhile. I am grateful for it because I know how it helps me, but it also feels comforting. Even though technically I rent it, it I feel like my ventilator is mine.
When I used an electric scooter in college to get around campus, I loved it, too.
When I was in grade school, and had to wear ankle and foot splints for a few years, I hated them, mostly because they hurt. I don’t think I ever felt stigmatized by any of the disability-related “gear” I have used.
If you use any kind of adaptive equipment, do you love it, feel attached to it, hate it, or tolerate it? Do you feel stigmatized by it, or do you make it a fashion accessory? Or, do have no feeling or opinion at all?
Please share your thoughts in the comments below, and I will include them in a more complete post on how we think about the devices we use.
Thursday, May 15, 2014
Mia Mingus On "Crip Solidarity"
Mia Mingus, Leaving Evidence - May 3, 2010
I just mentioned in my last blog that the Stella Young essay Dear 16-year-old Stella is my favorite piece of writing on disability. I think this post by Mia Mingus is now the runner up for me. For those of us with disabilities, it challenges us to be better “crips”. I think it can also help explain to non-disabled people … and disabled people just starting to explore what disability means ... what, exactly, “crop culture” is supposed be.
Stella Young On "Inspiration Porn"
Megan Griffo, The Mighty - May 14, 2014
Via Ramp Your Voice.
I have been reading here and there about Australian Comedian / Broadcaster Stella Young doing a TED Talk in Sydney, and finally here is a chance to share the video of her talk. Any time Stella Young writes something or gives a presentation on disability it’s worth tracking down. As it stands, she is the author of my favorite piece of writing on disability, Dear 16-year-old Stella.
Here, she introduces the TED audience to the concept of “Inspiration Porn”, and gives a pretty convincing argument for why it is a bad thing, not just something that rubs disabled people the wrong way. She also asserts that disability isn’t “a bad thing”, which is an idea I understand and basically agree with, but I think is very hard even for some disability rights folks to swallow. Personally, I would prefer to say that disability isn’t “as bad as you think”, but I get what Stella means here.
Ironically, I found the video via Ramp Your voice, on a website called The Mighty, whose slogan is “Superheroes Among Us”, and appears to traffic in a form of Inspiration Porn. They present the video with seemingly no awareness at all that they practice at least some of what Stella speaks against. I’m glad they liked her talk and happy they offered it up, but it shows just how ingrained the inspiration instinct is, especially for a certain kind of “good guys / let’s all be positive” organizations and websites.
Pass The CRPD ... For Spite
Phil Pangrazio, AZ I See It, azcentral.com - May 14, 2014
A few weeks ago, I noticed a new round of social media activity in support of the UN Convention on the Rights of Persons with Disabilities (CRPD). The reason for the renewed activity was that the Senate had finally approved a different United Nations Treaty, on fisheries. This prompted CRPD supporters to launch a slightly tongue-in-cheek campaign asking: Why does the Senate feel it important enough to pass a treaty on fishing, but can’t see it’s way clear to pass a treaty on the rights of people with disabilities?
The "fish" formulation took off, and it's great to see mainstream newspapers, like the one linked above, using it in a renewed push to pass the CRPD on the grounds of decency and common sense.
The subtext of this, of course, is also the reason why the CRPD has failed to pass twice. It’s got almost nothing to do with disability rights. The problem is that it is a United Nations treaty, and a handful of highly ideological right-wing and religious organizations argue that the UN itself is illegitimate, powerful, and hostile to freedom and US sovereignty. Any UN treaty that fails in the Senate is a victory for these people, almost regardless of the treaty’s topic.
The fishing treaty probably passed because it’s about as niche and obscure a treaty as can be imagined, so the advocacy knives weren’t as enthusiastically out for any conservative Senators who dared to vote for it.
Take a look at this May 5 piece by two attorneys for the Home School Legal Defense Association, one of the strongest opponents of the CRPD … and and of the UN itself.
William A. Estrada, Esq., Director of Federal Relations and Cordell J. Asbenson, Congressional Action Program Director
Home School Legal Defense Association - May 5, 2014
Read the whole piece ... but here are my "favorite" quotes:
“HSLDA has fought on many occasions to stop ratification of United Nations treaties, most recently with our work to defeat the UN Convention on the Rights of Persons with Disabilities (CRPD). While there are many reasons HSLDA opposes the CRPD, one key reason is that the United Nations is openly hostile to religious freedom, the right to life, homeschool freedom, and parental rights ... ”
"The modern UN has become a powerful global player that is hostile to many freedoms that we as Americans and homeschoolers take for granted. UN treaties have become tools used by unelected, power-hungry international bureaucrats to gain control over nations and free peoples ... ”
"Protect Your Family
If you aren’t yet a member of HSLDA, consider joining today! HSLDA’s work benefits homeschooolers in the United States and around the world. We invite you to participate in our ministry to the homeschool community.”
Oh, right. Don’t forget the membership come-on at the end! Protect your family … pay us dues!
Clearly, this organization is about more than the practice and policies around home schooling. I doubt they care much about the concerns of left-wing, hippie parents who home school their kids. Their constituency appears to be right-wing religious families who feel like the world is against them, and believe that the Federal Government and the UN are agents of godless socialism. I also question whether the organization has any special insight into the unique needs of kids with disabilities … who sometimes have very specific reasons to benefit from home schooling that have nothing to do with religion, traditional values, or the meaning of national sovereignty.
All of which is to simply say that for the most part, opposition to the CRPD is bullshit. Opponents may have a slight area of actual disagreement to the treaty, insofar as its language suggests that kids with disabilities have some rights that could take precedence over what their parents want to do. It is possible to view that catastrophically, as total usurpation of parental authority. You can also view it more sensibly, as recognition that children ... even disabled children ... are human beings, and not their parents' property.
The irony is that we could have a real discussion about whether the UN has enough power and relevance do anything about disability rights around the globe, other than pass what is essentially a set of suggestions. CRPD opponents fear the awesome power of the UN, while the only real argument against the CRPD is that it’s probably too weak.
That said, I really think the Senate should pass the damned thing. For one thing, all UN treaties have ambiguous authority. That’s part of the point of the UN … it relies less on naked power and more on information, persuasion, and role-modeling. Second, it is embarrassing for the United States to be one of the few holdout countries on this, when it basically pioneered the whole concept of “disability rights laws”. Finally, at this point, I want to see the CRPD pass to spite its opponents. They are so dishonest and cynical that I want to beat them just to see them beaten.
That’s not very noble motivation, I suppose, but it’s how I feel.
Addendum:
For more information on the UN Convention on the Rights of Persons with Disabilities, visit disabilitytreaty.org.
Addendum:
For more information on the UN Convention on the Rights of Persons with Disabilities, visit disabilitytreaty.org.
Wednesday, May 14, 2014
Another Thought On “Defined By Disability?”
Followup to: Defined By Disabilities?
How about this? … “He’s hasn’t let his disability define him” is irritating because it it’s the way newspaper and TV news reporters say, “He’s disabled, but surprise, he’s not sad, he's awesome!"
How about this? … “He’s hasn’t let his disability define him” is irritating because it it’s the way newspaper and TV news reporters say, “He’s disabled, but surprise, he’s not sad, he's awesome!"
Defined By Our Disabilities?
Since Monday, I have been thinking about the meaning of an often-heard phrase in the disability community, and from people who interact with the disability community:
What do people mean when they say, "My disability doesn't define me"? Or, from another perspective, “He / she doesn't let disability define him / her”? What do we mean by "define"? What negative experiences and feelings do we think we are avoiding by not being "defined" by our disabilities? Is it mainly that we don't like being labeled, or is there more to it than that?
I invited people to share their thoughts on these questions, and two people commented:
The Wheel Deal:
"What does a definition do? It explains what a word is. If someone were to explain who I am, give a definition of me, my disability would only be part of it. A disability does not make a person, they are much more than what they "have" and how they get around. As a disabled person I do not let my disability define me. To me that means that I am more than just someone who happens to use a wheelchair to get around. When I meet someone new our "get to know you" conversation doesn't center around my medical history. My life and thoughts do not revolve around being disabled. Being disabled is part of me, I fully acknowledge that, but it's not all of me.”
Debra Buell:
"My problem with the words we use to talk about anyone, disabled or able bodied is that they are the perception of others who may or may not have an appreciation for the full human being. You've said it here, Andrew, when people talk to us, we have interests beyond our disabilities to share. Sometimes people have a hard time getting past whatever the body barrier is that exists. I actually think that very attractive people have some issues in this area. People are awed enough to keep themselves distant. People with tattoos scare some people. In the case of disabilities, people may feel awkward or scared and they keep distant. To be able to have a full sense of who I am, you have to be brave enough to dare to approach me and then look me in the eyes, not focusing on my wheelchair.”
Both of these comments point to the frustration and pain of feeling as though non-disabled people see us and just think, “disabled”, and move on, as if they already know everything that’s important about us. Underlying this is also a practical concern, that if people never bother to see us in three-dimensions, then we will lose out on more than just friendly small-talk … we will be disadvantaged in job opportunities, friendships, and relationships.
So, when we as people with disabilities say we don’t want to be defined by our disabilities, it seems clear that what we mean is that we want people to see all of us, including, but not restricted to our disabilities.
I think it’s different, though, when non-disabled people, either directly or indirectly … like in new stories … say that we are not defined by our disabilities. I think in these situations, it means:
You are successful and independent, not stagnant or dependent on other people or support systems.
You look and act “normal”, even though your disability is also obvious. Your appearance and personality are familiar and appealing, while your disability quickly seems like just an add-on.
You rarely seem to need help. You seem to have your situation well in hand, and you never seem to be stuck or helpless.
You don’t complain much or get upset about your difficulties.
You have a positive attitude. You are ambitious and always willing to try. You don’t use your disability as a crutch or excuse.
Do these thoughts sound familiar? It's as though "not letting disability define us" is a stamp of approval. We're doing disability right!
The problem is that almost nobody with any kind of disability truly fits these descriptions. Even the most successful and independent among us rely on some adaptive tools, techniques, or supports from others. Some of us look different enough that no amount of positive attitude can overcome peoples’ initial awkwardness on meeting us. We all run into physical and attitudinal barriers that can wear on our patience, and place real external limits on the things we want to do. We all have legitimate reasons to complain, and complaining can sometimes be productive. Finally, it is hard for a non-disabled observer to tell who has ‘given up” out of malaise or laziness, and who is genuinely stymied by complicated, intractable problems that one person alone can’t sort out.
None of these things necessarily mean we are “defined by” our disabilities or have “let our disabilities define us”.
“He doesn’t let his disability define him” presumes a kind of disability ideal that few if any of us can ever live up to. Nor should we perhaps if that ideal is imposed on us from the outside by people who only vaguely know what it takes to function in a practical way with disabilities.
I think that’s the key. It’s one thing for us to say that we don’t want others to define us by our disabilities. Of course we don’t want to be reduced to one attribute. It’s another thing entirely when other people say we haven’t let our disabilities define us, when what they mean is that we fit their idea of what makes a disabled person admirable.
So it’s okay if the first thing someone notices is my disability. That’s only natural. It’s also fine when they find out that disability is an interest of mine … that I also choose to think about disability issues. That’s another way that disability defines me. My disabilities do partially define me, they are part of who I am. I am also defined by dozens of other likes, dislikes, aptitudes, interests … not to mention race, gender, ethnic background, education, family, geographical region, etc.
Ultimately, saying that I or someone else with a disability isn’t “defined by disability” feels like running away from something, or trying to hide something shameful. That’s why the phrase bothers me. Yet, I also need to remember the other meaning ... that we don’t want to be seen as nothing but disabilities. Nobody wants to be simplified into an icon.
More comments from Tumblr:
Brilliant comments by Vent Blog:
"... Lets try that again and change the words around
Ex. “I’m a girl but I don’t let that define me! I like video games and sports. I don’t wear makeup and dress in casual clothes. I don’t diet or obsess about my appearance. I’m just one of the guys!”And more from Posts and Mirrors:
" ... There are parts of me that my disability has less to do with, but it’s such a pervasive part of my life that it touches on basically everything. I don’t get the option of ‘rising above’ or ‘conquering’ my disability, and I don’t prefer to spend my life unhappy about that fact. There are times I still rail against it, but mostly I work at learning how to accept the definition that is unavoidable and how to work with that to have the life I want."
Tuesday, May 13, 2014
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