Thursday, 29 August 2013

Court Decides That Disabled Man is to Have a Vasectomy

A court recently decreed that a disabled man in Britain be given a vasectomy for because it's in his "best interests".

The man in question, known in the media as DE, is described as having "severe learning disabilities." I'm not a qualified diagnostician, but given that his reported IQ is around 40, I'd venture a guess that his diagnose goes beyond learning disabled to intellectually disabled (the media does tend to use these diagnoses interchangeably, although they're quite different.)

DE is 36, lives with his parents, and has a girlfriend with whom he's been for several years (and who also, according to the media, has "severe learning disabilities.") The two had a child together in 2009. DE has said that he doesn't want more children. His parents and his doctors petitioned the court to force DE to get the vasectomy on the grounds that he doesn't have the mental capacity to agree to it, and the judge agreed that a vasectomy was "overwhelmingly in his best interests." Read more here 

Several experts testified at the hearing, and the judge said of the order that DE get the vasectomy: "...the court does not make such an order lightly, conscious as it is that for the court to make an order permitting the lifelong removal of a person’s fertility for non-medical reasons requires strong justification." Read more here Here are some of the things that I hope were considered.

DE's Vasectomy: Consent Issues

Experts at the court hearing testified that D.E. has the capacity to consent to sex. Yet, the Telegraph reported that DE's mental age is between 6 and 9. Read more here I don't know what the absolute minimum age where any kind of for sexual activity is in Britain, but I doubt it's much lower than Canada's age, which is 12 years old when the other party is less than two years older and not in a position of authority Read more here .  I recognize that DE is legally, because of his age, an adult, and that these tests of mental age aren't always accurate. But it's incumbent on the people surrounding both both DE and his girlfriend to make sure that they understand the physical and emotional issues surrounding sex, to ensure that the dynamic is appropriate and non-abusive, and that they understand, to the greatest extent possible, the need for contraception and protection against disease.

The fact that DE won't use condoms is indeed problematic. However, assuming that these two are a monogamous couple, this wasn't the least invasive alternative. An IUD or a monthly injection for his girlfriend is more effective than a condom, doesn't require keeping track of a pill each day,  and would still leave both the option of having another child if they ever chose to. Was this investigated? If not, we've add a weird little layer of sexism onto this that really didn't need to be there.

And, if the couple is non-monogamous, a vasectomy won't protect them against disease.

Bottom line, however, if experts feel that this man is able to consent to sex, and clearly doesn't want to experience a consequence of sex, then he should be able to consent to an operation that will prevent that consequence. I find the court's ruling on his capacity very confusing.

DE's Vasectomy: A Slippery Slope

Are we ever not on a slippery slope when it comes to this sort of thing?

These two weren't using condoms (at least not consistently, obviously, because they have a kid that his grandmother is now raising.) I heard constantly growing up (and constantly told the kids that I used to work with) that if they can't talk about protection with partners and be responsible about it, then they need to consider whether they're really ready for sex. And I'd probably tell these two exactly the same the same thing. But I'm sure they heard that from a variety of people, as many teens (and adults) who end up with an unexpected pregnancy do because they...just didn't use protection.

However. We don't forcibly sterilize non-disabled people who chronically won't use condoms while they talk about how they don't want children, after they've already fathered a child that they can't support. We don't bring courts in to determine whether sterilization would be in the best interest for them, their psychological health, and the continued well-being of their relationship. Read more here

We allow people who make these sorts of decisions to continue to have control over their sex lives and their reproductive faculties, and say to them, "If you're going to make these choices, you have to live with the consequences of these decisions. Here are your options if you want to avoid those consequences." We even have services in place to deal with what happens when people continue to have unprotected sex because they, say, don't like condoms. And while I find it very difficult to understand why people can be cavalier about unprotected sex, that's not really the issue right now.

The issue is that this particular person who was being cavalier about unprotected sex was sterilized.

And now we have to ask, where do we start making the exception? A comment on one of the articles suggested that everyone with an IQ under 80 be forcibly sterilized. I've worked with people who's IQ's were significantly below 80 who could clearly explain to me that they always needed to use a condom when having sex to prevent pregnancy and disease. And I've heard people with IQ's significantly above 80 talk about having habitual unprotected sex. So I'm not buying that.

DE's Vasectomy: Not a Good Precedent to Set

The judge said that rulings like this will be made on an individual basis, but I'm not comfortable with that. I'm uncomfortable with this double standard for how we treat non-disabled people vs disabled people, and I'm uncomfortable with the idea that the court has been officially been empowered to compel someone to undergo a sterilization procedure.

I'm seeing a lot in this case in this confuses me, and I hope it's because we just haven't been privy to the debate that went on behind the scenes, and not because all the issues weren't explored thoroughly. The stakes are just too high one this one.

Monday, 12 August 2013

Jenny Hatch's Victory

I'm a little late to getting to Jenny Hatch's story, but I thought that it deserved a post. Not just because I'm so happy for Jenny that after her fight drag out in the courts for a year, she got the outcome that she wanted, but because I agree with Dave Hingsburger that hers is a ground-breaking case (Jenny and Eve and the Statistics of Freedom).

Any attorney worth their salt, when asked if they really think that an intellectually disabled client can truly understand what's at stake in a case involving their life (like a competency hearing or a guardianship dispute) can now point to Jenny Hatch's case and say that if there's any question about that, then there's at least the responsibility to take the time find out before jumping to conclusions about the client's level of understanding.

Because Jenny Hatch certainly understood, and was very clear and very consistent.

Jenny Hatch: Background

Jenny Hatch is 29 years old and has Down Syndrome. Her court battle began when her mother and stepfather filed for and were granted temporary guardianship of her. Jenny had been living with friends Kelly Morris and Jim Talbert, who she'd met when she started to work at their thrift store in 2008. She had to leave their home and go live in a group home that her family chose. (Read more here)

The Washington Post reported that the relationship between Jenny Hatch and her mother was "contentious" even before these present stressors were put on it.  (Read more here)

At the court proceedings, ADA expert Peter Blanck testified that the family's petition for guardianship probably the most restrictive he'd ever seen, "a complete removal of all decision making for the individual..."  Jenny's mother and stepfather wanted the right to decide where she lived and who she saw, and to make medical decisions for her.  (Read more here)

Jenny Hatch: The Court Case

Jenny Hatch's case was complicated for a number of reasons: There was an abuse allegation against Jenny's mother (Read more here), and there were questions as to why the family wanted guardianship so badly when they'd said in the past that they weren't able to handle Jenny's needs  (Read more here). But, when you strip it all down, as the Washington Post rightly points out, the case came down to two questions: 1) Was Jenny Hatch a legally incapacitated person who required a guardian? and 2) If so, were her parents or Morris and Talbert the more appropriate people to be her guardian? (Read more here).

On August 2, 2013, the judge decided that Jenny could benefit from  guardianship for a year, with Morris and Talbert as guardians. She will live with them for the year, but after the year is up - it's all up to her.

I actually think that's a good way to work it out.

Jenny Hatch: Thoughts and Best Wishes

I understand Jenny's family's concerns about her safety. I've seen some of the behaviours that they cited as concerns for them as behaviours in people that I've supported that have concerned me  (particularly the tendency to kiss and hug inappropriately or to engage in inappropriate behaviour with members of the opposite sex, which court documents said were concerns of Jenny Hatch's mother  (Read more here). I understand that sometimes putting more and more restrictions on a loved one with a intellectual disability looks like the best way to keep them safe, or that increasing reliance on the behavioural expertise of professionals looks like the best way to deal with someone that chronically lies. I don't have a daughter with a disability, but I have had (still have) people with intellectual disabilities in my life about whom I worry, whose well-being concerns me, and who I sometimes wish that, God damn it, I could wrap in cotton wool and protect from a world that seems so very dangerous for them. But that wouldn't be fair to them, because:

"I make my own decisions," Jenny Hatch told her attorney. "Not you." (Read more here)

And that's why, if the judge saw fit for Jenny Hatch to have a have a guardian for a year to safely work on the hard and soft skills that she'll need for whatever life that she chooses as an independent adult, I like that guardianship went to Kelly Morris and Jim Talbert.

Jenny didn't want the life that her family wanted for her. The close control that her parents' guardianship gave them took away the life in the community that she enjoyed so much: her job, her friends, going to church, participating in the Special Olympics, and being a part of life at Republican headquarters in her town  (Read more here). Talbert testified that Jenny Hatch told him that she hated the group homes, that they treated her like a child, and that she'd keeping asking him to come get her (Read more here)

Jenny Hatch actually ran away from four group homes (Read More Here).  She wanted to live with her friends. She told the court repeatedly that she didn't want guardianship. Her lawyer has a note from her: "I don't need gurdenship anymore...Yes, I need help...only Jim and Kelly." (Read more here)  He also has sign that she made and hung on the wall in the group home for a period: "Bring My Freedom of Choice Back. Bring My Job Back." (Read more here)  For their part, Morris and Talbert threw their full effort into supporting her through this court battle from the very beginning...but it hasn't necessarily been about getting her back into their house, even though that was something that they'd obviously loved to have seen.

That's something that I respect to a tremendous degree about them:

“It’s about her right to choice,” Morris told the Washington Post. “If she chooses, I want to live with Jim and Kelly and then, six months down the line, she decides ‘I want to live in an apartment,’ that is fine. If Jenny wanted to live in a group home and made that choice on her own, we wouldn’t be where we’re at.” (Read more here)

I hope that Jenny's family can get to the point where they can see that the restrictive guardianship terms that they proposed wouldn't have been fair to Jenny, and that they would have made someone as involved in her community as she is very unhappy.

I hope that they can be happy for Jenny as she starts her life.

And I hope for Jenny that her life is everything that she wants it to be.

Congratulations, Jenny Hatch. You're a remarkable woman. I'm so happy that all this has worked out for you.

Thursday, 1 August 2013

Amelia Rivera Update: Home with a New Kidney!

I've been covering the story of Amelia Rivera and the Children's Hospital of Philadelphia's (CHOP) refusal to give her a new kidney since her mother Chrissy Rivera blogged in 2012 about her belief that CHOP had refused the transplant because Amelia has an intellectual disability. Well, there's a happy ending to this story. Doctors at CHOP performed the transplant July 3, using a kidney that Chrissy Rivera donated.

Amelia Rivera and CHOP: The Timeline

Amelia Rivera has Wolf-Hirschhorn syndrome, "a chromosomal disorder affecting about 1 in 50,000 people that’s marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics." For those that haven't been following this story, or who need a review, here's a timeline of the events in Amelia Rivera's story:

  • January 2012 --> Chrissy Rivera blogs about an appointment at CHOP where a kidney transplant was discussed. She talks about seeing a paper that called Amelia Rivera "mentally retarded", and describes a conversation with a doctor and a social worker where she was told that Amelia was not a viable transplant candidate because of her intellectual disability. Read Chrissy Rivera's blog here. Over 40,000 people signed an online petition calling for the hospital to reverse its decision.

  • February 2012 --> CHOP apologizes for how Amelia Rivera's case was handled and agrees to evaluate Amelia for a transplant, insisting that it doesn't discriminate on the basis on intellectual disability. 

  • August 2012 --> CHOP clears Amelia Rivera for a transplant, with Chrissy Rivera as the donor. Read Chrissy Rivera's blog here.

Chrissy Rivera's most recent update, posted on July 30, tells of how she donated her kidney to her daughter on July 3. Mother and daughter were released from hospital on July 12 and both are doing well.

Amelia Rivera and My Sadness

I am so happy that CHOP came around and that Amelia Rivera got the life-saving surgery that she needed. After all, she was only three years old when all of this began. I am saddened, however, and angered, that Chrissy and Joe Rivera had to fight so hard to get Amelia this surgery to begin with.

I'd been working with intellectually disabled people for almost twenty years when I started this blog, but I was terribly naive in many ways. The doctors with whom I'd had to work when I was supporting people had been great - I'd always been satisfied that the people I supported (of whom I'm very protective) were getting the same quality medical care from their doctors, specialists and surgeons that I was getting...that anyone was getting...and after my stroke, I was fairly experienced with doctors and with medical advocacy.

But still naive.

Learning that there are members of the medical establishment who are confident enough in their assumption that an intellectually disabled person can't have a good quality of life or contribute to society that they'd deny a three-year-old a life-saving transplant was a real eye-opener.

And just in case you think that this sort of attitude is an isolated incident, here are some other stories that I covered that were eye-openers for me:

AWA: Shocking Story of Ableism by a Hospital

Paul Korby Denied Heart Transplant; Autism Cited as One of the Factors

Protecting Babies with Down Syndrome

Let us be ever mindful that there's still much work to be done.

But for today...

...let's celebrate with Amelia Rivera and her family. I couldn't be happier that this story has turned out so well.