Monday, May 07, 2012

Not Part of the Parent Hood

Toronto is buzzing about a 'feel good' story of parents who 'won' the right to 'keep' their baby 'even though,' gasp, they have cerebral palsy. Children's Aide had swooped in, prepared to snatch the baby - saving it from a life of being loved by parents who desperately wanted their child. This story has been mentioned to me seemingly thousands of times. Most who mentioned the story focused on the Hollywood ending. Perhaps even right now there are some actors and actresses, without disabilities of course, hoping the play the role on screen.

I want you to take a really good look at the Toronto Star article, read it carefully. There is so much to write about here. I'm going to resist the temptation to rage about the powers that the state assumes when someone has a disability. I remember very clearly doing a session with couples with intellectual disabilities wherein a man discussed his wish to have a child with his wife and the fears that he had that the child would be stolen from them, saying, 'as soon as they call you disabled they start taking things away from you.' I trust that most readers here will understand what he's saying.

What bothered me was the massive betrayal, in that article, from Linda Soulliere, executive director of the Coalition for Persons with Disabilities. Yes, she stood for the rights of the couple to be parents. Yes, she offered support. All that is laudable. But, one would guess, that's also her job. One can almost hear her pride in her accomplishment as she describes the couple as 'competent' and reassures us all that they will do fine with the baby. How cutting edge is she? Wow.

As you can tell. I'm angry with her.

Because after all that she goes on to reveal her own prejudice and bias. Yep, the Executive Director of the Coalition for Persons with Disabilities makes sure that people understand that 'rights' and 'competence' belong to only one set of people with disabilities, let's not go wild here. All, definitely doesn't mean all. Note the purposeful exclusion in her interchange with the Star, "There is a misperception that people with disabilities that affect their speech have 'lower cognitive ability,' Soulliere said, but that’s not the case." She allows readers to rest assured that discrimination against people with "lower cognitive abilities" is still a done deal. Yepper, you won't find crusader Linda defending "those people" having children, keeping children, raising children. God Forbid!!!

Interestingly the "plan" that Soulliere outlined sounds an awful lot like the work done by  ACHIEVA's Parent Education Program in the States. They provide support and assistance to parents with intellectual disabilities. I can just imagine Ms Soulliere fleeing the room screaming at this news. Yes, there is an organization that has the courage and determination to assist people with intellectual disabilities exercise their fundamental right to be a family. By the by, this organization has been doing this work for a very, very, long time. I knew about it, and I'm certainly not the Executive Director of the Coalition for Persons With Disabilities. I'm just a disabled dude.

Ms Soulliere, if you read this, I want you to understand that 'Disability' is a very big word. It refers to a very large community. It's a word that isn't 'owned' by people with physical disabilities, it isn't owned by any particular group. If you are going to use the word DISABILITY without a qualifier it means that you are making reference to 'a borderless community of people with disabilities'. Everytime you speak you make it clear that people with intellectual disabilities 'dirty up' the word "Disability" and that the broader community who read Canada's largest subscription newspaper, understands 'wink wink' that when you say 'DISABILITY' you certainly don't mean 'them'.

Not only do you say this in an interview with the Star, you say it over and over again. Finally in one article you make it clear that you are representing people with physical disabilities, and that when it comes to people with intellectual disabilities you choose to be as uninformed and prejudiced as you expect those who read your words or hear your interviews to be. You may be enjoying your 'fifteen minutes of shame' but do you have to have it at the expense of the reputation of people with intellectual disabilities?

Back to you readers, did you notice in the article that at one point that Ms Soulliere, the EXECUTIVE DIRECTOR OF THE COALITION FOR PEOPLE WITH DISABILITIES, gets a bit preachy and says, "there needs to be more education … especially essential services like CAS need to make sure that their workers are experienced and have exposure to persons with disabilities, so they can more adequately see the ability that also accompanies the disability.”

I would suggest that before she openly vilify people with intellectual disabilities again, she might want to meet one or two. But, I'm guessing that "seeing the ability that also accompanies the disability" might be a little bit out of her grasp. I'm not sure that "education" and "experience" would take here..

Thanks Madame Executive Director, you've just made the journey to rights and freedom for people with intellectual disabilities longer and harder - nice job.

Coalition, my ass.


Anonymous said...

Let me get this think that it is a fundamental right for people to have children if they want them. And within that right they can expect others to pay for someone to help them take care of their children at the expense of taxpayers. And what about the children's rights of such parents? There must be an organization that will help them.

Gee - I'd like to be a doctor. I probably am not quite up to snuff on the know-how needed, but I would like the taxpayers to pay for my education. I can't get good health care, nor many of my friends, and since I believe that it is my fundamental right to have good health care - I should be able to be a doctor.

There are some things that are rights and there are some things that are privileges. Driving for example. Now - last time I checked there was a test to be able to drive - so all are given the best chance to be safe. Perhaps parenthood should come with a test - there certainly are enough folks out there who probably wouldn't pass. (And I am NOT speaking of those with disabilities.)

I think that people who want to have children that are unable to care for them themselves in such a way that it becomes a burden on society (taxes) shouldn't. It borderlines on selfish.

Sorry - this will be unpopular with this crowd. Who determines what is a fundamental right? Let me know - and I'll see about medical school.

jammy said...

I don't know anyone who has raised children without some form of support/ assistance from others. I know that, in parenting my own four there were 100s of people who directly or indirectly helped me 'take care' of them. I don't have a disability and nor does any of my kids, but it still 'took the whole village' to raise them, and for that I am truly grateful. Yes, being a parent is a privelege, but not one to be denied because of disability. i am shocked to read the article, and can only hope a similar situation would not have occurred in NZ, though I've no doubt it would if either parent had in fact had an intellectual disbility. Eugenics (including removing children from their parents) is alive and well. The rationale most often heard is, that' they child will overtake the parents cognitively' and therefore be disadvantaged. Well my children are probably all more 'intelligent' than me (consider the Flynn effect), but that's OK because my IQ is over 70! Doesn't necessarily mean my capacity to love and nuture is any greater though.

Susan Ludwig Goharriz said...

Thank you, Dave. Your article is courageous and articulate - and I'm surprised to see that you have already seen one "nay-sayer!"

Bubbles said...

In my job I see/support many parents with Intellectual Disabilities who are successful at being parents and some who aren't. I also serve parents who do not have Intellectual Disabilities who are successful and some who aren't. The services that support these famillies who have difficulties with parenting are already in place and have long been. They are usually health based services or socail services based. What I've learned from my experience is that some PEOPLE have it and some PEOPLE don't. It really has very little to do with being disabled or non-disabled. It's more about loving your child and the motivation to learn what you need to to care for them, no matter what challenges you face. I know many normal intellect parents who can't do this because they can only put themselves first. I know many parents with Intellectual disabilities who can do this. Who are any of us to judge????

Colleen said...

Dear Dave:

Thank you for putting this into words. I sense and agree with your outrage.

As to anonymous's comments - Supports for people to live full and meaningful lives are not a burden. They are an investment - and one that pays off in huge dividends. The results are healthy and vibrant communities for everyone, even doctor wannabes.

Anonymous said...

I agree that people who purport to be a "spokesperson" for the cross-disability community (meaning all disability populations) should expose themselves to information about all disabilities and listen closely to what leaders in each community say are their biggest needs, issues, concerns, etc. And if a person hasn't done this, they should at least take care to be very clear in who they can and cannot speak for. And should take care not to advance the rights of one population at the expense of another. I know transgender people, for example, who do not support the gay/lesbian rights organization, Human Rights Commission (in the US) because it is said they have actively worked *against* transgender rights in their quest to advance human rights for gay/lesbian people.

One part of the problem, though, might be with the media in that journalists may not themselves really understand who is and isn't qualified to act as a "spokes person" for the disability community (to the extent that any one organization ever could be a spokes person for any one large, complex community encompassing multiple and often contradictory perspectives and opinions, which is to say always imperfectly but there are still certain organizations better qualified than others). What led them to choose this organization to approach for a quote in the first place? Should they be educated about more appropriate alternatives?

Liz Miller said...

Wow, anonymous. Each and every currently-abled parent is a car crash or a stroke away from being a disabled parent.

And each and every parent relies on help every day to raise their children. From relying on the electric grid and telephone system to work, to having sitters when we need to go to an appointment without our kids, we rely on others.

One thing is obvious, you are significantly disabled in a way most classically disabled people are not, since you lack both compassion, and critical thinking.

Anonymous said...

Thank you Dave for a post that has made me seriously think. The post including the original anonymous one have contributed to my thinking.

I will be honest I have always wondered about adults with intellectual impairments raising children and whether this could be done in a way that is advantageous to the child.

I've never had the same issue about physically disabled parents although I do know it can be an issue for social services - just because you are in a chair doesnt mean you can't make decisions about your child's welfare.

It takes a village to raise a child - yes a good point. It does challenge the whole issue of what are the necessary qualities to be a parent.

Can you post some more information on this issue, I would like to learn more.

Anonymous said...

Anonymous from top again. I knew I would get "flak" - but I do stand by my view. I wholeheartedly believe "it takes a villiage" to raise a child. Thankfully there are many who do come along in various ways.

Yet - there is a difference between a parent having to get help bathing their child because they know that with their physical limitations (wheelchair/car accident) they cannot do the task safely - and someone with mental disabilities who may decide to warm up their child in a microwave or iron clothes while on them. A person without mental challenges can make good decisions and may need assistance to carry them out. Those with mental challenges most likely won't make good decisions by themselves - if they could they wouldn't be disabled. So then someone else is "hired" to assist them in making them. Just who is raising the child?

I'd love to hear from those who have been brought up by parents who are intellectually disabled. How have they faired?

Myself - my mother ended up in an institution. She could not cope. So guess who had to? That also meant no made lunches, no birthday parties, no social activities...on and on. Ask me how I faired - how it affected me.

Sure - you can say it made me stronger, made me more aware of disabilities - sure you can find some "good" in anything - and I have. Yet - if I had a choice it would have not been the path forced on me.

Anyone else have thoughts on that??

Janet said...

Anon, I am truly sorry that you had the experiences you had. However, you do realize, I hope, that most children who recieve care in services come from parents without disabilities. Brutalizing children, abandoning children and neglecting children are crimes committed by PARENTS, almost exclusively without disabilities. I thought that your examples of microwaving and ironing offensive. I haven't seen a wave of these incidents happening in the media. I'm sure everyone would agree that parents who cannot care for children, disabled or not, need intervention or the child needs rescuing. The issue here, as I see it, is that people with intellectual disabilities be given the same chance to succeed as any other parent. The automatic assumption that they "will iron their child" is the problem. Parents with intellectual disabilities do succeed and are succeeding. I don't mean to take your situation lightly but I was pretty violently abused by my mother and you won't now find me suggesting that women not have children.

Susan said...

The new organization, TASP (The Association for Successful Parenting: Enhancing the lives of families when parents have learning difficulties), had an article published on parents w/id in Exceptional Parent in February. We submitted about 15 photos of parents caring for their children--great pictures--and the only picture they put in the article was one of a little boy playing, with no parent in sight! We have a long way to go, but check out TASP--it's international and has members from the US, Canada, Australia, Iceland, and anywhere else. It has parents, lawyers, advocates, providers, social workers, psychologists--all together.


Ettina said...

"someone with mental disabilities who may decide to warm up their child in a microwave or iron clothes while on them."

I know the 'mental age' analogy is problematic, but I think it's relevant here.

A person with mild mental disability may, as an adult, be considered to have the mental age of a 12 year old. It's possible, but unlikely, that a 12 year old could live independently. But they *can* babysit children safely, and certainly wouldn't microwave a kid or iron clothes that are being worn.

Someone with more severe cognitive disabilities probably wouldn't be a competent parent. But most of those people don't get involved in romantic relationships either. Every cognitively disabled parent I have heard of is mildly affected, and therefore is likely to be at least as competent as an underage babysitter.

Anonymous said...

Thank you Dave for a wonderful post. I have worked in the disability community for over 10 years and am repeatedly confounded by the silos we have. We beat each other up, instead of siding together to make our civil rights case stronger!
@Anon 5/7 1:19
I think you are missing the point. We all recognize there are things we can not do. I with my head injury, rely on a variety of cues to keep myself on track, but that doesn't mean that I can't be a loving parent. Your post reminds of the times in our US past when we automatically sterilized "undesireables" because the "collective we" knew better than the individual and/or the loving couple. Heck, Helen Keller wasn't allow to have a lover because people with ANY disability weren't suppose to have sexual or romantic feelings. Or, for that matter, feelings and longings for a family.

Anonymous said...

Susan thanks for the TASK information, the site is down just now but I have saved it to look at later.

I wanted to reply to Janet's post. One of the reasons I am keen to look at this issue for myself is that in my experience working in social services one of the groups of children more at risk of coming under their radar was parents with a degree of intellectual impairment who struggle to provide for their children causing neglect. Perhaps this has shaped my opinion of this and I am happy to challenge this as I know the opinion of many of my collegues was always that adults with intellectual impairments cannot be effective parents. Perhaps the issue was more to do with lack of support and effective working with parents. Would parents with intellectual impairments who may already have lost their "village" of support necessarily have the links that ensure good childraising?

Just to make sure my statement is not misunderstood I am not saying that all abusive parents had intellectual impairments.

Anonymous said...

I think that those with mental disabilites should turn their attentions to other areas besides child rearing.

There may not be any media releases on microwaving but there has been on post-partum depression and of mother's killing their children. These are usually fairly stable women with support systems that for chemical or other reasons are not mentally fit. You can believe that this is used in their defense.

So why purposely put children in an undesireable situation. There are lots of ways to get your "parent fix" without having children around 24/7.

Is the care giver going to be there all the time? What about a constant crying child, an ill child, constant night needs, or even dealing with a disabiled child? It is trying for parents with everything in place - how about those that just don't have it together all the time?

Yes - there is so much joy at parenting. Yes - you would like to see everyone experience the joy. But it is not for everyone. It isn't a measure of their love or capability for love - it is just common sense.

Anonymous said...

Until there is a standard for parenting - I would be very hesitant promoting those with mental deficiencies having babies.

Those advocating such need to think beyond the longing parent to the children.

How would you feel if an airline, after reflection and and being approached by organizations that have "courage and determination" allowed pilots with mental disabilities to pilot the jet. The assurance being that the plane would have a co-pilot, so someone would be with them. Would you be comfortable flying with that jet company? Probably not. Face it - there are things that require full use of ones faculties - and piloting a plane is one of them. How about a doctor? Fireman? If you wouldn't feel safe with someone with mental problems doing those jobs - why is it that we feel so "right" about putting little lives in the hands of those unable to care for them by themselves. Why do their rights mean more than the children's?

Dave Hingsburger said...

There is so much here to be said. I don't know that I am the person to say it, but if not, I will find someone who is - I'll bring the topic back.

Baba Yaga said...

Anon: I think you're trying to make a fair point, and mixing it up with some imprecision.

There are people too crazy to effectively rear children (not all of them diagnosed with mental illness). People too severely depressed. People too short on common sense. People who've never achieved competence. People who are just bloody selfish.

You're spot on that the children of those people suffer, one way or another. Anyone advocating that unfit parents have a right to inflict misery on their offspring is a nut.

None of the things which make parents unfit are exactly equivalent to IQ, though. You can have very low intellectual, classically academic abilities, and be profoundly common-sensical and very competent in practical life. (Or have very high intellectual, classically academic abilities, and rather lack common-sense or competence.)

That's one aspect: it's important to define terms, to get the results one wants. Using 'mental ability/disability' as a shorthand for competence/ incompetence doesn't work well, because so many different things get bundled together under that label.

And that in a way is the point: one can rarely assume that *any* broad descriptor tells one what one really wants to know. As soon as one assumes it does, one messes up people's lives, the lives of children and parents both.

You're correct, children are not a right. & some of us who are unfit to be parents can get our caring-for-children fix another way, resulting in a non-zero sum. (Easy for me, because I have a moderately posh accent, obvious brain-power and a reasonably normal appearance. Not so easy for someone with Down's, who might be *much* better at looking after children than I. Prejudice gets in the way.)

One shouldn't really assume fitness in any pre-defined group. It's just that one also can't assume unfitness, and that there are several types of wrong involved in doing so on the basis of a broad descriptor.

There's another aspect to this, which *isn't* obvious unless one's been sensitised to it. That is that there was no need, in the specific case at hand, for the question of cognitive ability to be raised. Asserting the couple's competence was all that was really needed.

But to make quite sure we understood that the parents are competent to look after their child, the 'spokeswoman' asserted something which boils down to "they're not like those other, incompetent people": 'less than' thinking, which goes far beyond the specific case of child-rearing. The implication which is really worrying - and really there, in a coded way -, is that people with "lower cognitive ability" are not so much people as those of us with (presumably) higher cognitive abilities.

That kind of implication is not obvious until one's sensitised to it. It's actually so culturally prevalent that it's hard for most people to see even when they look straight at it. "Assumptions are the things we don't know we're making".