Disability, Caring and Rights

I read this article earlier and it and the response to it on twitter has greatly disturbed me.
*Content warning for the article- parent literally calling her disabled adult daughter "damaged goods" and discussion of adult woman's personal care needs.*

I am saddened and angry at how this story has been framed. There are multiple human rights abuses described in the article. The article itself adds a new breach of Siobhan's rights- the right to privacy by discussing her intimate personal care needs in public. I am frankly disgusted by how her mother describes her:

“Sorry. I’m going to be very straight about it: she’s not special. She’s damaged goods. I wanted the child that I thought I was going to have. The one that was going to have two children by now, and have finished university studies, and be having a life for herself, in a home where I could visit and babysit my grandchildren. I wanted to have that child.”

That's not how being a parent works. You bring a child into the world and you do your best for them but you can't plan a life for them that fits around your fantasy.

On Twitter this is being heralded as brave honesty- that finally a parent is breaking the taboo of how hard caring is. That's bullshit. There's an article every day about how hard it is to parent disabled children. There's no end of parents sharing their innermost thoughts about the child they wished they'd had instead of the damaged one they got. Seriously type "care disabled son or daughter" into Google or Twitter to see how mainstream and non-taboo this narrative is.

There are stories each year of parents who go so far as to murder their disabled offspring (both adults and children) and every single time, there is a flurry of voices talking of how caring and loving the murderous parent is and how they ended life out of love and mercy. Anyone who objects to this despicable narrative is asked to "walk a mile in the killer's shoes" as though those asking that people don't murder disabled people are the cruel ones. In the light of this common narrative, I think Rosita Boland who wrote this article and the Irish Times which published it has to think again about the way they framed this story and their duty to Siobhan herself.

I am even more disgusted by the callous dereliction of duty by the Irish state. There appear to be no moves to investigate what Siobhan wants or what is in her best interests. She needs access to an independent disability advocate trained in non-instructed advocacy as soon as possible to work out what she is entitled to and how to achieve it. Her parents are being dumped on by a system that has abandoned people with high support needs, treating them as second class citizens. If Siobhan's human rights are respected, her parents will benefit.

So much for a country in which those in power seek praise for their so-called pro-life laws.

Thoughts on A World Without Down’s Syndrome?

We watched the documentary prenatal screening and the reduction in people being born with Down Syndrome (DS) presented by Sally Phillips.
Below is a short clip.



The best article on this that I have read is by Francis Ryan in the Guardian.
I have however some points that I want to make about the programme. I tweeted these this morning and am bringing those thoughts together now.

First principle is that individual women must have full bodily autonomy. Nothing in #worldwithoutdowns negates the need to legalise safe, free abortion in Ireland/elsewhere. It is still essential that Irish people #repealthe8th and that women in the north are also afforded rights over their own bodies.

It's good that a programme like A World Without Down’s Syndrome? was created and screened. It's right to raise these questions and challenge assumptions about the value of disabled lives.

Sally Phillips was open about her bias as the mother of a child with DS. The scientists, however, were at pains to dissociate their work from any consideration of ethics. Lyn Chitty who developed non-invasive prenatal test was out of line when she said to Sally "Well your son is likely to outlive you," as though that was a bad thing. Children tend to outlive parents, that's a good thing. I want my 3 kids to live at least as long after my death as I lived before their births. And the Californian dude who sequenced his unborn son's DNA said, science just tells you what you can do. Morality is something else.

Geneticist George Church in Harvard asserted, "It's all about education. It's not the technology that's the problem. It's the societal pressures and the market forces that are at work." He said it's the job of parents to change society's perception of the value of disabled people. As usual, the work of disabled self-advocates who should be at the centre of this is ignored.

Society doesn't value and accommodate disabled people. The rhetoric around disability is deficit and bigotry laden. Politicians and the media depict disabled people as scroungers who burden our education, health and social care services. In this climate, it is no wonder many people opt for prenatal tests.

However prenatal testing puts pressure on mothers to reject a specific child which is different from women who do not want to be pregnant at all. Fatal foetal abnormality is different again- it is appalling that pro-forced birth folk conflate FFA and disability. Little angers me more.

The show attempted to highlight the humanity of people with Down Syndrome. It partially succeeded. It emphasised, as usual, the benefits that they bring to others, how loving and "predisposed to happiness" they are and how they make families better. I dispute this; those with DS are as variable in their personalities and temperaments as all of us. They have innate value. They don't need to be cute or clever or exceptional.

I disliked the section with the woman crying on stage about the way midwives told of the diagnosis. The show centred the experiences of mothers of kids with DS. I disliked the way Sally hugged the woman with DS in Iceland and called her a lovely girl. That was infantilising

It was just wrong to interview a woman who'd had an abortion and have her explain her choices on camera. This issue is about society's values, not individual choices.

I've read complaints that only "high functioning" (yuk) people with DS were shown. Rubbish. There's more than enough out there about how hard it is to raise disabled kids. I'm happy to see people with DS, old and young, just getting on with life for once. It's irrelevant whether people with DS or other disabilities have special talents that benefit society. If everyone had to prove their usefulness to society to be allowed to exist, the world's population would take a big drop.

I worry that the information given to women following screening belittles the value of disabled lives, and inordinately emphasises difficulties they face. It's not as though all non-disabled people enjoy a charmed, perfect, blissful existence.

Is there a test to see if the child you're pregnant with will grow up to be an abuser, thug, manipulator, murderer or Tory? Is DS so much more deserving of eradication than all these?

The problem is that women are getting the message that they would be irresponsible to choose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'.

The rhetoric that disabled people are drains on society leading empty and pain-filled lives is eugenics and anti-feminist.

Why She Left

A couple of years ago I wrote a post explaining why someone like Nigella Lawson, smart, beautiful and successful, might stay with a man who is abusive.

Today, based on that list, I will share some of the reasons why someone might opt to end a relationship with an abuser:

• She's concerned about the impact living in such a poisonous environment is having on her children.
• She's seen her children fall victim to some of the tactics used on her.
• She knows now what this is- she's had support from people and professionals who've helped her to identify the mind games and manipulation.
• She has the support of those who have known and cared for her all her life.
• She knows that she deserves a better life.
• She's almost 40 and the thought of waking up at 45 still living like this turns her stomach.
• She's still afraid, but has clarity of thought, is still guilty about her children but is free from obligation to a grown adult.
• She's liberated from focussing on his concerns, needs, complaints, wants. She's giving nothing more.
• She has had enough of the incidents, explosions, hurts and humiliations.
• She started to keep track of what was happening.
• The emotional bond she once had to him has broken. That last link finally snapped.
• She welcomes change, knows things will be hard but will improve with time.
• She would rather be alone than with the wrong person.
• She's immune to the apologies, promises that he loves her, that he'll change and do whatever it takes to make things OK.
• The false hope has finally died.
• She retains her values and principles and knows that she couldn't have fought any harder to make it work.
• She wants to enjoy life.

It can be difficult when you're enmeshed to find clarity and make concrete plans. For anyone who is lost in a fog of fear, guilt and anxiety- get help from a domestic abuse organisation. They will help you to make plans and stay as safe as possible.