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.

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

Jul 312015
 

Welcome to the Ready, Sexy, Able news round-up for July.

This month we have news and opinions from all over the world, about everything from sexual health rights for disabled people to the changes that can happen in a relationship after disability.

I have also included some sex education articles that aren’t disability-specific, as well as a section for general disability rights pieces.

Sexuality and Disability

Sex and disability: breaking the taboo

Asking questions about sex that disabled women are often afraid to pose

People with intellectual disabilities demand sexual rights

Address Sexual, Reproductive Health Needs of Young PWDs

My Husband Had to Learn Sex Again, and I Had to Become One Tenacious Bitch is an excerpt from Wondering Who You Are: A Memoir> published earlier this year and available in print, e-book, and audio.

New Sex Ed Program Created for “Special Education” Students

ACSEXE+: Talking disability and sexuality in Montreal (audio podcast, no transcript)

“A woman with a disability gets real about dating and sex. She’s funny and honest

I’m in a wheelchair, I’m queer and I’m still a real man.

Paralyzed Woman Poses In Lingerie To Prove Disabilities Don’t Limit Sexuality
The Public Reacts to the “Paralyzed Bride” taking off her clothes in the #Whatmakesmesexy shoot

This review of Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement, available in both print and e-book, suggests that this research on the sexual lives of disabled people living in sweden and Denmark is valuable, but that at over 300 pages,and filled with theory and analysis, this book won’t be accessible to everyone who could benefit from reading it.

Sex Ed

From Scarleteen, a sex and relationships education site for young people, comes advice on sexual communication and how to deal with feelings of sexual shame.

From sex educator Cory Silverberg: An article asking Is There Such a Thing As Good Enough Sex?

and Sex Is a Funny Word, a sex ed book for 8 to 10 year olds available in print and e-book.

Disability Rights

We Need to Change the Game of How We Talk About Intellectual Disability

Why Person-First Language Doesn’t Always Put the Person First

Jul 052015
 

June 26 was a history-changing day. Marriage laws in the U.S. finally caught up with reality – many people’s reality, anyway.

This ruling opens up a whole new world of fredoms. It solves some of the problems that transgender people wishing to marry have faced up until now and gives same-gender couples the option to marry if they wish.

But the work, the struggle, the heartbreak isn’t over yet. more than half of the states still allow LGBQ and transgender people to be discriminated against by current or potential employers. Incidents of violence against LGBQ (lesbian, gay, bisexual queer) and transgender people is still frighteningly
high.

The legal battle aroud marriage equality has been about making sure that same-sex couples have the same rights and protections as mixed gender couples.

But, for many people with disabilities, no matter what either partner’s gender is or isn’t, marriage can mean the end of the same kind of safety and security other married couples count on. Not only do these couples have to contend with bias against, and disbelief of their relationships, but their financial security and access to health insurance is often removed or limited when they marry.

Love doesn’t always win either for folks with disabilities, especially for folks with intellectual or developmental disabilities. The love of and between disabled people is often discounted.

Love doesn’t win when people don’t take your desire to get married seriously. Love doesn’t win when you marry, but the housing that’s supposed to help you be as much a part of the community as possible doesn’t let you live together. Love doesn’t win when your wish to spend time with the person you love is seen as “cute,” or childlike. Love doesn’t win when you want to be recognized as a couple and do the things other couples do, whether you can legally marry or not, but the people around you, the people who are supposed to be supporting you, won’t let you do that.

Paul and Hava Forziano got married in 2013. Finding a place where they could live together proved to be a challenge.

It’s worth taking a good look at why the group homes where Mr. and Mrs. Forziano lived before marrying thought that helping them live together was “unprecedented,” “impossible” and “fraught with difficulties”.

IN defending these organizations, the legal team cited Mr. and Mrs. Forziano’s Individualized Service Plans (ISPs) as reasons why the couple could not live together and be adequately served by either group home. They label these plans as “complex treatment plans.”

An ISP is actually a “written personal plan, or blueprint, for a person with developmental disabilities that summarizes the help he or she wants and needs to achieve his or her own aspirations in life.”. Meeting residents’ medical and supervision needs is only part of the picture here. Actually meeting the requirements of Mr. and Mrs. Forziano’s ISPs would mean finding a way to help them live together, even if that meant referring them to another agency.

Not meeting Mr. and Mrs. Forziano’s “aspirations in life” – to live together as most married couples in North America traditionally do – is, I believe, backwards thinking. This is not what the community living movement is all about.

The wonderful part of this story is how supportive Paul and Hava’s families have been of their relationship, and of their desire to live together. Disabled people, especially developmentally disabled people, don’t often get that kind of support from their families.

Bill Ott and Shelley Belgard also have lots of family support. They’re not married legally, as doing so would reduce Shelley’s access to needed health insurance, but they had a commitment ceremony and live together. They live in a different part of the country, and their living support needs are different, so getting to live together after their marriage wasn’t the same sort of ordeal it was for Paul and Hava Forziano. Bill and Shelley had a tonne of support for being together, but still, when Shelley’s mother heard about their engagement, , her internal response was: “This, too, shall pass.”Bill and Shelley proved her wrong, and the couples therapist they worked with also went to bat for them. So, in addition to everything else Mr. Ott and Ms. Belgard had working for them, they had someone from the healthcare field willing to see that their disabilities didn’t diminish their love or their capacity to be together. Read the rest of their heartening and smile-inducing story here.

And one more story, among the thousands out there, most of which haven’t been told:

I won’t tell you much about the two men in this story – the two men who loved each other. You need to read this for yourself. It’s a capsule of discrimination against gay people, dismissal of disabled people’s wants and desires – and of love – and a reminder of this countrys history of cruelty and violence towards disabled people, especially by the folks tasked with supporting and helping them.

Here’s the story. I recommend having tissues handy.

Love did finally winfor these men.

Further Reading

Author’s Note

Referring to the couples mentioned in this post As Mr. and Mrs. Forziano and Mr. Ott and Ms. Belgard was intentional. I wanted to show respect for their relationships – their unions. Using more formal titles, and more formal language in telling their stories, was also a way to show that their stories are important, that we shouldn’t take them lightly. Since I don’t know them, consistently using their first names would have been overly familiar, and would have made them sound like children, not the adults they are.