Tag Archives: children with disabilities

Recommended Reading for August 31, 2010

Pamela Paul for the New York Times: Can Preschoolers be Depressed?

In the winter of 2009, when Kiran was 5, his parents were told that he had preschool depression, sometimes referred to as “early-onset depression.” He was entered into a research study at the Early Emotional Development Program at Washington University Medical School in St. Louis, which tracks the diagnosis of preschool depression and the treatment of children like Kiran. “It was painful,” Elizabeth says, “but also a relief to have professionals confirm that, yes, he has had a depressive episode. It’s real.”

Mary Crawford for the APA Monitor: Parenting with a disability: The last frontier

Social psychologist and bioethicist Asch says that a lack of familiarity may be one reason for professionals’ biases toward people with disabilities. “Very few professionals know people with disabilities as peers,” says Asch, who teaches at Wellesley College in Wellesley, Mass. “Their only contact with people with disabilities is in a crisis situation, where the professional is [called on for help]. So the notion among some professionals is that people with disabilities always need help and can never give help or nurturance to another human being or provide a child with security or protection.”

Naomi Jacobs for the Guardian‘s Comment is Free: Disabled people do have sex lives. Get over it.

This is not a story about “taxpayers’ money” – most disabled people who have local authority-funded care plans are only allowed to spend these on basic services such as help with washing and dressing. What it is really about is moral outrage over an isolated case, which is also a smokescreen for much more disturbing attitudes towards disabled people’s lives.

CBC News: Down Syndrome group slams Emmys

“With race, sexual orientation and disability, you are talking people’s core identity — things that are unchangeable,” she said. “What do we get out of making fun of things that people cannot change, other than degrading them and making them feel they are not part of society.”

Amber Dance for the Los Angeles Times: In the Works: Microneedle patches could take the sting out of shots

The Band-Aid-like patches, coated with microscopic needles, generally don’t hurt. Moreover, they may actually work better at delivering vaccines and some medications, according to recent research.

Recommended Reading for 20 August, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Wheelchair Dancer writes about Body Matters:

It’s about how we imagine living in other people’s bodies and the value we ascribe to them; it’s also about how we pass on the fear and vulnerability of change, injury, or pain in our own physicality. And that’s just on a personal level; things get more complicated when we think of the body as a political space.

From the Human Rights Watch, Malaysia: Disability Rights Treaty Ratification an ‘Important Step’. The treaty went into effect on 18 August.

“Malaysia has taken an important step to protect the rights of people with disabilities,” said Shantha Rau Barriga, disability rights researcher and advocate at Human Rights Watch. “But the convention should be seen as a springboard for changing Malaysian laws, policies, and practices that violate the rights of people with disabilities.”

[…]

Malaysia entered formal reservations to the Disability Rights Convention concerning the prohibition of torture and other ill-treatment (article 15) and the right to liberty of movement and nationality (article 18). It also made a declaration limiting the government’s legal application of the principles of non-discrimination and equality.

It’s Australia’s federal election tomorrow, so I’m devoting the rest of this to Australian issues.

From The Age: Anger as disabled pupils spend up to four hours a day on bus in the southern state of Victoria:

Parents say their children have suffered dehydration, toileting problems and emotional distress on the free bus service that runs children to and from specialist schools.

And, to end on a happy note, disabled Australian swimmers are doing beautifully in the ICP World Swimming Championships in the Netherlands. (Swimming is very very popular here in Australia, as I’m sure you can imagine. You can read some of the results in Swimmer Cowdrey wins third gold medal at the Sydney Morning Herald. We also did really well at the 8th World Deaf Golf Championships in Scotland!

Send your links to recreading[@]disabledfeminists[.]com.

Reproductive Justice is for Everyone, Even People You Don’t Like

There’s a sign on the wall of a local clinic which says, according to my paraphrasing memory:

You have the right to decide if you want to have children or not, and to determine their number, timing, and spacing.

The clinic provides reproductive health services to low income members of the community, and plays an important role in ensuring that people have access to everything from safer sex supplies to prenatal care. I’m a big fan of theirs, and I’m a big fan of that sign, which I think embodies the core of reproductive rights and justice. Everyone has the right to make decisions about their own bodies, and one of the core values of the reproductive rights movement should be supporting people in this. Supporting all people, leading all kinds of lives, making all kinds of decisions.

Educating people so they can make more informed choices. Helping people access services to allow them to carry out the choices they are making, whether that’s a decision to get an abortion or to have a child or to get some birth control. Fighting sexual assault and rape as violations to bodily autonomy.

Recognising that while a choice might not be one you would make personally, you can still support someone in making that choice, and you can still enable that person’s ability to make decisions freely. As soon as we start making decisions about the ‘right’ kind of families and the ‘right’ number of children and the ‘right’ number of abortions to have, the concept of reproductive justice starts to fall apart. Who decides these things? Who is the arbiter of whether someone is making the ‘right’ choices?

There’s one group that gets left out of a lot of reproductive justice discussions: People with disabilities.

I’ve seen the decision to have a child with disabilities compared to child abuse, whether we’re talking about a child with a prenatal diagnosis, or a child born to parents with an increased risk of having a child with disabilities. I’ve seen disabled parents treated as though they are committing child abuse simply by being disabled, and being parents. I’ve seen people act like people with disabilities don’t need access to sexual education, because obviously we don’t have sex. I very rarely see any of these actions labeled as what they are, which is ableism.

Denial of reproductive rights to people with disabilities is ableism. Denial of our needs in the reproductive justice discussion is also ableism. Telling us we don’t belong at the table is ableism. We deserve reproductive justice too, and we have needs that are not being addressed by the current reproductive rights movement.

One of the problems with attempting to bring disability into reproductive justice conversations is that people act like the issues we cite are things of the past; they aren’t important, because they don’t happen anymore. People with disabilities are never involuntarily sterilised to prevent them from having children. Children are never taken from disabled parents. People are never shamed for deciding to continue pregnancies when a prenatal diagnosis indicates that the baby will be born with disabilities.

Well, these things are not in the past. They are happening right now.

A few recent cases from here in the United States: A child was taken from blind parents, solely because her parents were blind. It took intervention on the part of the National Federation of the Blind to restore the child to her home. The children of a disabled woman were denied visitation rights on the grounds that it would upset them to see their mother. A quadriplegic woman was told she couldn’t be a good parent. These are just three recent, high profile cases where parents were told they couldn’t care for their children because of their disabilities. Believe me, there’s more where that came from.

As for forcible sterilisation, the Ashley X case attracted a great deal of attention in feminist communities, but it’s far from the only one. Last week, we linked to a story about drugs that suppress sexual desire being used in autism ‘treatment.’ In Central and South America, forcible sterilisation, particularly of Indigenous women, is widespread and the United States has a history of sterilising Indigenous women as well. Tessa Savicki, a Massachusetts mother of nine, is suing after a hospital sterilised her without her consent during an unrelated medical procedure in 2006.

If sterilisation of people with disabilities isn’t a problem anymore, how come someone wrote a bill in 2009 to bar forced sterilisation of people with disabilities?

In a conversation at dinner the other night, I had to physically restrain myself when one of the people at the table attempted to argue that a mutual acquaintance was being ‘irresponsible’ by having a child at her age, ‘because it might be born disabled.’ This is not the only conversation like that I’ve witnessed, on or offline.

For people with disabilities, the reproductive justice discussion is extremely personal. People debate whether we should be allowed to have children, people believe that compromising our bodily autonomy is acceptable for the ‘greater good,’ and people debate whether or not we should have been born. For people who were born with disabilities, hearing people claim that parents having disabled children is akin to child abuse is rather appalling.

The thing about reproductive justice is that it’s not just for the people you like and the people you agree with. It’s not just for young, nondisabled, cisgender women who want to use birth control right now and have access to abortions, with the possibility of having children later. It’s also for parents of large families. It’s also for disabled parents. It’s also for religious parents. It’s also for disabled children. It’s also for people who are not interested in having children. It’s for everyone living in a body, no matter what kind of body it is, no matter what kind of life that person leads. Reproductive justice, true justice, should be all-encompassing.

Excluding people with disabilities from the conversation by either being actively hostile or dismissing our concerns is not reproductive justice.

Injuries to mobility-impaired kids: researchers suggest “consider avoiding stairs”

MSNBC is carrying a Reuters article, Insult to injury: More kids hurt by own crutches, about injuries to young people “related to the use of crutches, wheelchairs and walkers”. Apparently, these injuries are “on the rise”, with significant numbers of USAn emergency room attendances related to injuries sustained while using a mobility aid.

Note, firstly, that there is no formal E.R. category nor any panic about injuries related to the use of legs, despite this being a rather large category of actual injuries.

Note, secondly, that journalists reporting on this study make no attempt to interrogate the root cause of the injuries, preferring to attributing the injuries to the use of the device itself, despite this:

[…] three out of four times, the injury was caused by tipping of the device or falling as the result of coming upon some sort of obstacle such as stairs, a curb, a ramp, rough ground, or icy, wet conditions.

Why are these injuries being attributed to use of the mobility aid, instead of to poor, inaccessible design? Why are kids falling trying to navigate stairs when there should be ramps and elevators available? Why are kids falling on curbs when there should be curb cuts? Were these injuries on rough ground and ice preventable by salting, pathways, cover? 70% of the injuries occurred while children were using wheelchairs. How many were occasioned while these children were trying to negotiate inaccessible environments?

We have no idea. Because no-one, apparently, has bothered to ask. Nor has any mention of inaccessibility been considered worth reporting or putting in the press release.

Instead, we get headlines like “Crutches, wheelchairs can cause injuries” and “Injuries can be caused by crutches, wheelchairs“.

The authors of the Pediatrics study themselves chose to title their journal article “Pediatric Mobility Aid–Related Injuries Treated in US Emergency Departments From 1991 to 2008“[1], and there is no mention of universal design or accessibility in their abstract.

In contrast, there are plenty of comments throughout the study of the issue of the supposed “misuse” of mobility aids, despite this accounting for only seven percent of injuries.

There is a mention of accessibility in the full-text article, buried deep in the discussion, but this never made it to anything that will be read by the general population, or indeed most of the medical profession. Furthermore, the mention of accessibility only talks about in-home modification – completely failing to address the number of injuries that occurred on curbs, rough ground, and icy conditions.

This is what the authors had to say about accessibility:

Curbs, stairs, rough terrain, and steep inclines and declines were common trigger factors for falls and other injuries, leading us to speculate that lack of accessibility, particularly in the home, may be 1 factor contributing to mobility aid–related injury. For children who were using mobility aids on a temporary basis, particularly crutches, home modification and avoiding stairs may not have been considered.

“Avoiding stairs”.

Mobility-impaired children should consider “avoiding stairs”! This is not just ignoring accessibility; it’s a giant slap in the face. Do the authors seriously think that it hasn’t occurred to anyone with a mobility impairment to try to avoid stairs? Really? We’d love to. That would be fabulous, thanks. However, we have lives. Lives in inaccessible environments, where we sometimes are left with the choice to take stairs or not go. To school and university, to work, to doctor’s appointments, to public transport, to artistic and political events, to social gatherings. Mobility-impaired people don’t take stairs and curbs out of choice; we do it because there’s no accessible alternative provided. And what happens to PWD who can’t take stairs no matter what? Confinement. Yes, PWD aren’t “confined” by wheelchairs; PWD are confined by discrimination, thoughtlessness, and inaccessibility.

Instead of using their platform to publicise an unequivocal call for safer public design, the authors choose to focus in their abstract and press release about how they think “additional research” is needed. The need for further research is, indeed, their ONLY conclusion! But if this research focuses on device malfunctions and children’s competence, “misuse” of mobility aids and custom in-home modifications, it is destined to fail.

If there is to be additional research, a broad, societal view must not be so studiously ignored. However, do we really need more and more and more research to tell us that kids with mobility aids have trouble negotiating stairs, have trouble getting up curbs, have trouble on icy ground? More research to tell us, five or ten or twenty years of inaction down the track, that PWD of all ages are endangered by inaccessible environments?

Without recognition of the systemic causes of a problem, there can be no successful systemic solutions. How much “additional research” is needed before there is action? How many inquiries? How many reports? How many white papers? We need to stop looking at the trees, and look at the forest.

The solution is to inaccessibility is accessibility. The first-tier principles of mobility accessibility are straightforward and long-established. Get on with it.

[Hat tip to Andrea of the Manor of Mixed Blessings]

[1] Pediatric Mobility Aid?Related Injuries Treated in US Emergency Departments From 1991 to 2008
Alison M. Barnard, Nicolas G. Nelson, Huiyun Xiang and Lara B. McKenzie
Pediatrics published online May 24, 2010;
DOI: 10.1542/peds.2009-3286