A Small Step Forward for Blind Parents

Jan 052018
 
A magnifying glass, for looking closer at what's right in front of us.

I wrote a while back about the multi-layered and inexcusable discrimination many disabled parents face.

There’s nothing about having a disability that makes someone less capable of parenting.

That feels too obvious to even say, but it’s a truth, obvious or not, that needs to be repeated over and over until people get it, until disabled parents
don’t have to fight tooth and nail to be able to care for their own children.

But, expecting and new parents with disabilities usually face doubt, or invasive questioning, or inadequate services, or loss of child custody, or months- or years-long court cases fighting for parental rights (usually while the child lives in foster care). These actions are taken, we’re told, to protect children. But these situations are usually about disability, not about child welfare. They’re about assuming that disabled adults themselves aren’t any more capable than children. They’re aboutthe lack of education legal, medical, and social service professionals get about disability, and about how that lack leaves room for personal biases. They’re about these same professionals knowingly or unknowingly setting disabled parents up to fail the “tests” put to them to judge their parenting fitness, by not providing parenting information in accessible formats (Braille, audio, large print, plain language) or by not providing accessible equipment (such as a changing table with the right set-up for a wheelchair user needs to reach everything and keep the baby safe).

Now, a new law in Illinois spells out the rights of blind and vision-impaired parents.

Under this law, social workers, lawyers and judges (and anyone else involved in child custody proceedings) won’t be able to use a parent’s blindness as evidence that they should or shouldn’t be given custody, and blindness cannot be a factor in evaluating a person’s fitness to become a foster or adoptive parent.

This law establishes “procedural safeguards that require adherence to the Americans with Disabilities Act.”

Yes, you read that right. A state law was drawn up and enacted to make sure a nearly 28-year-old federal law is followed. Not just that, but the Americans With Disabilities Act protects people with many kinds of disabilities. This law focuses only on blind parents.

Why not more inclusive? I don’t know, except to guess that whoever proposed this law has a personal stake in making sure that blind parents aren’t discriminated against. That’s awesome, but I wish they’d been more forward thinking to include all recognized disabilities, or at least some categories, such as sensory and physical disabilities.

As it stands now, this extra state protection applies to only a small part of the disabled parent population. If you’re blind, and you’re an Illinois resident, you’re good, but, knowing that disability discrimination touches everyone, and that it can have disastrous consequences when children are involved, I can’t help wishing that the time and effort taken to draw up extra legal protections could have been used to create protections that are more wide-ranging.

On the hopeful side, perhaps the passing of this law will raise awareness among policy-makers and activists.

***

For more data on parents with disabilities in the United States, check out this post I wrote about the 2016 White House Forum on Parents With Disability. (Just an aside: It’s hard to imagine this forum happening in the current political climate.)

Or, see why I included parenting in target=”_blank”>this list of “need to know” data for healthcare providers.

Parenting and Disability: We need to keep talking about it.

Jun 072016
 

Disabled folks often get conflicting messages about what people think we can do. ON one hand, we’re seen as superhuman – as supercrips of the highest order – or as childlike and incapable – or worse, less than human.

I recently wrote about the emerging voices of disabled parents (including the voices that aren’t being heard), and I remembered how this contradiction between capable and helpless played out in what I learned when I was growing up.

*

Growing up blind, going to a school for blind students, I always understood that blind people could be parents. Teachers and support staf said things like: “When you grow up and have kids…” Sometimes, a parenting class was offered for high school students – a lot of raw eggs (which are so very much like live babies, don’tcha know) rode home on the schoolbus with their “Mommies” and “Daddies” – though they’d stopped offering that class (maybe they ran out of eggs?) by the time I was old enough to take it.

But…when it actually came to talking about real live blind parents, what was said didn’t line up with the “blind people are capable” message. The subtext behind “she looked so tired” of the blind Mom shopping at the mall with her four children was that she and her blind husband shouldn’t have had so many. Behind the observation that another set of blind parents had a messy house was the implication that they couldn’t possibly take care of themselves, and their children, and their house – because of blindness. The mention of a single blind Mom’s baby not “smelling the freshest” was an indictment of her mothering, because clearly properly coupled (and married), able parents never walk around the grocery store with a baby who smells bad. I rarely heard these criticisms of visibly nondisabled parents; or, if I did, they weren’t so sweeping and self-righteous. It’s that old problem of something being blamed on a disability, when maybe a parent is just having a really awful day, or hadn’t had time for the weekly housework, or had a million other things going on that were way more stressful and hard to deal with than their disability.

*

I think I was in Grade 11 the year a “blind mother” was part of the annual Career Day line-up. I was sscornful, even a little angry; other schools didn’t have people come in on Career Day to talk about parenting – I was sure of that! (And I probably did have something there.)

But, okay, let’s be real; I turned my nose up at the very idea of a talk from a Mom being on par with a session given by a lawyer, or a massage therapist, or an artist. No, not one of my more enlightened moments!

Looking at it now, knowing that being a parent is bloody hard (sometimes literally bloody), and underappreciated work, and knowing what’s stackd against disabled parents (negative attitudes and legal barriers), I think we did need to be hearing from folks who were actually living this life that people told us we could live.

Actually, we needed to hear more from blind and visually impaired folks just living all parts of their lives – getting married, choosing to parent or being a caregiver to family members, choosing to pick up and move to Columbia for a year, or… As blind children we actually needed to hear a lot more from blind adults in general, – to learn from their experiences, from their processes, their successes and failures, the tricks that worked for them and the on-the-fly adaptations they made – not just to learn from the teachings of nondisabled people, who taught us how to get around by listening to traffic sounds and using our white canes properly, or how to cook safely (without ever, ever burning yourself), or how to read when most of the material out there (this was in the 1990s, before the explosion of the Internet) was beyond our ears or fingertips, or was too small (or the wrong colour) to read with impaired vision. We needed to learn what ableism and inaccessibility both looked like, how people responded to those experiences; we needed to learn that the tools and techniques were great, were useful, were indispensable really – they’re just not always enough.

*

Back to parenting…

None of what I learned or observed affected my decision not to be a parent – a parent to human beings anyway. That’s a different disability and reproductive rights story I may or may not tell some time. Having kids is a deeply personal choice, you know.

*

There’s nothing about having a disability that makes someone less capable of parenting.

That feels too obvious to even say, but it’s a truth, obvious or not, that needs to be repeated over and over until people get it, until disabled parents don’t have to fight tooth and nail to be able to care for their own children.

It’s a truth I’ll repeat: Disabled people can be parents. Disabled parents are just as capable of being strong, nurturing, loving parents as anyone else.

How well a person parents has way more to do with whether they wanted to be a parent in the first place, how much social support they get, and their own unique personality.

All parents are going to find, some time or other, that they respond to their child in a way that’s confusing or upsetting, and this is just as likely to happen in a context that isn’t disability-related at all.

*

According to Judith Rogers’ book The Disabled Woman’s Guide to Pregnancy and Birth, what babies most need from their primary caregiver – the person or people they form a bond to and know they can depend on – are food and comfort. Any other needs can be met by anyone the baby knows and is comfortable with, and whom the parent trusts.

Yes, that means it really can take a village to raise a child, and that a parent (whether by blood or adoption) can be an amazing parent even if they can’t carry their baby around the house, or dress it, or give it a bath, or if they do all those things with one hand, or rolling around the house in a wheelchair, or by touch and smell only, or only on days when their pain levels are low enough to let them get out of bed.

The interviews in this book highlight how adaptable children are. They don’t count their parents’ fingers and toes first thing! They don’t know that most people change diapers with two hands, or look at the number on the thermometer instead of listening to it read aloud, or run to pick them up every time they let out a squeak. They don’t know there’s a way their parents are “supposed” to do things; they just know “Is this person here for me?”

One woman Judith Rogers interviewed shared a story about how her toddler fell on the stairs, picked herself up, walked over to Mom’s wheelchair, climbed into Mom’s lap,and only then began to cry. Needing to go to Mom for comfort, instead of Mom coming to her, was just part of this little girl’s life. (And for people who wonder what the Mom would have done if her child was severely hurt and needed help? Well, she would have moved mountains is what she would have done. They just would have been different mountains from those in the way of someone not using a wheelchair.)

*

With so many disabled parents (at least 4.1 million in the U.S. alone) caring for children, you’d think there’d be more support for them, and recognition that disability is rarely at the top of the list of deciding factors for whether someone is fit to parent. That there isn’t this support, and that there is active resistance to the idea that children can grow and thrive in homes with disabled parents, speaks to, I think, the tendency to treat adults with disabilities as childlike, and to the idea that parenting tasks can only be done in one way.

Consider this advice from Disability, Pregnancy, an Parenthood:

“Do not try to show practical things (such as bathing/changing and breastfeeding) and talk at the same time. It is impossible to look at two different things at the same time. Explain, show, check understanding, let the deaf parent try it out and then correct any misunderstanding.

— Working With deaf parents: A Guide for Midwives and Other Health Professionals

It makes sense that you wouldn’t teach something to a blind person based on a diagram, or force a deaf person to choose between watching your hands or watching your face, or decide someone with one hand can’t possibly prepare a bottle even though they manage all their other life tasks successfully, if not easily. But when it comes to parenting tasks, we seem to have these conflicting ideas that parents will just “know” what to do, and that there’s one acceptable, safe way that everyone needs to lern. And, when disabled parents don’t know what to do (because who ever knows when they become responsible for a new life?) and they’re not capable of following the good-parenting checklist, they’re often seen as lacking.

What’s the solution?

Listen to people who are living it!

Amplifying Disabled Parents’ Voices: The White House Forum and Beyond

May 202016
 

In thirty-five states (and the District of Columbia), children can’t trust that their healthy, happy family will be able to stay together if one or both of their parents is disabled. That means that in almost three quarters of the U.S. the law allows for children to be removed from their parents based on parental disability alone, no evidence of abuse or neglect necessary.

How is this fair to children, let alone their parents?

There are at least 4.1 million disabled parents in the United States. Most sources for this statistic are clear that it’s likely an underestimation; there are probably many more disabled parents who just aren’t being counted.

But, they do count – and many of their voices spoke at the White House Forum on the Civil Rights of Parents With Disabilities earlier this month.

I wasn’t at this event, but the White House’s live streaming technology is fantastic so I got to follow along. Here’s some of what I learned:

  • Most people are not aware that disabled parents’ civil rights are violated frequently.
  • A parent with a disability is simply that – a parent. every person enters parenthood equally unsure of what the future will bring or how to fully care for their children.
  • Disabled people are used to figuring out how they can make something happen – while the rest of the world is telling us we can’t do that thing. (Moral of the story? Disabled people are going to keep creating families.)
  • The ADA (Americans With Disabilities Act) does a lot to protect parents with disabilities, since it requires systems like social services and family court to provide accomodations for equl access. It’s these systems, governed by individual states, that are violating the civil rights of parents with disabilities by not upholding the federal laws.
  • People with disabilities sometimes stay in bad or dangerous relationships because they know they could lose custody of their children if they leave or divorce their partner. Disability can be used as a weapon in a custody hearing; in states where a parent’s disability can be used as the only reason for removing their children, a nondisabled parent can simply point out the disability of the other parent and win custody of the children. Ignorance about disability means that child welfare workers and family court personnel don’t make a routine out of investigating whether the disabled parent is abusing or neglecting the children in any way before deciding they shouldn’t get custody.
  • Disabled parents often learn the most from each other. Frequently disabled people will turn to professionals – therapists, doctors, social workers – when looking for information on starting a family; these professionals usually don’t have the knowledge to help or advise them.
  • Disabled parents and caregivers need: More education for healthcare, social service, and legal professionals to prevent cases like this one, and more respect and acceptance from the general public to get people to think twice about staring at a blind mother walking her child to school and taking pictures of mother and child without permission.

For more comments about the forum, see the #PWDParents hashtag on Twitter.

There’s only been one panel archived so far. I’m really, really hoping the other panels were recorded and that they’ll be posted some time soon. There was a lot of important material that people need access to, a lot of voices getting a public platform for the first time.

Many people shared stories about ignorance and discrimination towards disabled parents. The fact that disabled parents were at the White House talking about their livs, and insisting on better treatment is exciting and amazing. It’s inspiring – as in inspiring to watch change being created, to hear voices of disabled people being given authority.

But, (and there’s usually a but, isn’t there?) I kept wondering about the voices we weren’t hearing.

Where were the voices of teen parents with disabilities, who will usually face double discrimination, assumed to be incompetent as parents based on their disability and their age?

Where were the voices of disabled parents living in poverty, who couldn’t have afforded to get to the forum, even if they’d wanted to? The unemployment rate for disabled people in the United States is twice that for nondisabled folks.

Where were the voices of disabled parents of colour, including First Nations folks?

According to Rocking the Cradle: “13.9 percent of American Indian/Alaska Native parents and 8.8 percent of African American parents have a disability.” Six percent of white parents are disabled.

The disabled parenting awareness and advocacy movement doesn’t reflect these statistics at all. The movement, as a whole, is very, very white.

As a white woman, and as a non-parent (that’s a word, yes?), I don’t have the authority to say if, or how, the needs and experiences of disabled parents of colour differ from those of disabled white parents. I know, from a personal conversation, that at least one black disabled mom thinks that important issues and stories from people of colour are being left out of these conversations. I also know that parenting and family, in general, can be complicated for many First Nations folks, because of the all-too-recent history of residential schooling. I know that “racism in the form of slavery and Jim Crow forms fully 83 percent” United States history and that this racism has huge and harsh effects on black children an their families. I know that being a member of more than one minority often makes people more vulnerable, which is why we need to actively make sure that people are given the opportunities to represent themselves, and why we need to remember that the stories we hear aren’t usually the only stories that need to be told.

What do we need to do to bring more voices, more perspectives, more experiences to the disability and parenting table? What do we need to do to give those folks’ experiences and voices equal weight once at that table?

The other missing voices at the White House forum were those of disabled parents’ children.

After all, this conversation is as much about children’s rights as it is about the right of disabled people to start and keep their families. As one panelist (and I wish I knew who it was, because she deserves to be publicly credited) said:

Children deserve to know that their families aren’t going to be ripped apart.

Further Reading

children of Disable parents Speak