Oct 092015
 

diane De Vries was born without arms and legs. This fast-paced, hard-hitting and beautifully honest documentary takes us through Diane’s life, through the ways the fear of her devoutly religious grandmother and the physical neglect of her mother shaped her childhood, through the ways being physically different impacts her interactions with others as an adult (she describes going to a networking luncheon where other participants asked about her wheelchair, but not about her work), her hopes and struggles, her experiences with intimate relationships and sexual expression. Some of her friends and attendants share their feelings and reactions to Diane, and their observations of how the rest of the world treats her.

What sets this story apart from other disability-related documentaries is Diane’s candid discussion of her experience in an abusive marriage.

I don’t think I ever felt like a victim, except when I was Jim’s victim.”
Jim was always my attendant as well as my husband, which I always hated. I thought that was the worst thing we could do to our relationship…
But he never wanted me to have an attendant.

He wanted the extra money.

He wanted to feel needed.

Disabled people are often at increased risk of experiencing intimate partner violence, and diane’s experience ticks a lot of the boxes for abusive situations – isolation, enforced physical dependence, and financial dependence (the couple’s economic stability rested on diane’s agreeing to let her husband work as her attendant).

Diane describes how Jim would become violent when drunk, throwing things, hitting her, and shaming her for the physical help she needed from him, such as help using the toilet.

This was in the seventies, and there wasn’t much technology to help people with limited mobility to use the phone, leave the house, or otherwise leave an abusive situation without someone’s help. Diane was eventually able to leave, after a friend dropped by to visit during one of her husband’s violent attacks.

Diane De Vries is (or was, I haven’t yet been able to learn whether she is still alive) a fascinating woman.

This documentary is one of the only sources I was able to find in which her story is told in her own words.

You can learn more about her through the cultural biography Venus on Wheels: Two Decades of Dialogue on Disability, Biography, and Being Female in America or through an essay (by the same author of the biography) published in Women with Disabilities: Essays in Psychology, Culture, and Politics (Health Society And Policy).

Note

October is Domestic Violence awareness Month and this entry is part of a series of posts aimed at raising awareness about disabled people’s experience of domestic and intimate partner violence.

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.