Tag Archives: parents with disabilities

For Granted

It’s odd how we sometimes take the habits of our children for granted.

I have a particularly chatty child. I can’t imagine where she gets her penchant for being a non-concise story-teller. Really. I can’t.

But when it is early in the morning and I haven’t had a chance to heave my second cup of coffee into my not-yet-awake face that adorable chattering doesn’t seem so adorable. It grates on my every nerve.

I just want to enjoy my coffee and check up on SRS Blogger BZNS in the quiet of the not-yet-awake-world. Without the repetitive chatter.

Who decided that there should be no volume control? (I really love my kid!) (I do! She’s awesome!)

However, at some point during my working day, I must have decided that not eating lunch or drinking my normal three litres of water seemed like a good idea. Sometime between picking up Kid from school, picking up last minute Thanksgiving groceries, and reassuring my mother that Korea is still outside my window I started to “green out”. I don’t know if you have ever had that experience, but I don’t ever “black out”. I get dizzy, nauseous, and my field of vision tunnels and goes green. When I was Active Duty one of my buddies who was training to go to BUD/S once told me this is a sign of dehydration, but I think it may have been a combination of things.

I couldn’t drive. I couldn’t speak, except in one or two word fragments. I managed to get out “seat…back” and “water”. I managed to communicate to The Guy that I needed water. He laid my seat back and raced back into the store to get me water while I lie there, with my hands numb, feeling trapped in my body. I could barely move, and managed to eek out a few tears as I wondered what had brought this on.

Then Kid patted my head, and instead of panicking, simply asked if I was OK. I managed “talk”, and she did. She simply did. She held my hand, and talked to me natural as could be, telling me stories about her day at school, about the green bean casserole she was going to make. She held my hand and managed to keep me calm with all of that chit-chat that my decaffeinated self can’t put up with some mornings.

As an adult when someone tells me to talk to them to distract them from something I come up with nothing. It is difficult to come up with mundane chatter. Somehow it comes so easy to a child.

Suddenly, that chatter was keeping me there. It was light, and if I had been in the position to think of it, I would have been so proud of her for staying level-headed in the situation. So I am thinking of it right now.

Finally, my water showed up, and twenty minutes later the shaking subsided, my vision cleared, and I was able to pull myself together. Magical thing now and again, water is.

It can’t be easy growing up with a parent with disabilities, because I am certain that there are times in their lives that they have to grow up faster than they would otherwise, and that there might be times that they face disappointments because of certain limitations. I know that for the most part, they grow up like most other kids, but every now and then they have to hold the hand of their parent while they are going through things (like nearly passing out).

I love her and her chatter.

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.

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.