♫...And I shouldn't be here, without permission. I shouldn't be here...♫

"I wish you'd never been born."

I remember the Sunday morning a couple of years ago when a well-known pro-eugenics tweeter was banging on about how babies with genetic conditions shouldn't be born. Despite claiming he was not disablist towards disabled people once they'd done the getting-into-the-world thing, all I could see in those tweets was that he wished I'd never been born because I have a genetic condition. He might have blocked me on Twitter so he can't see me; but I still see him RTed into my timeline frequently (something he said is actually 4th from the top in my timeline as I type). I'm constantly reminded that someone that thinks the world would be a better place without me in it is so well liked among the people I respect enough to follow on Twitter.

I remember all the times I've read that "parents on benefits shouldn't have kids. They shouldn't have kids other people will have to pay for." That includes my parents. So these people are saying that I should never have been born because my dad was forced out of work and onto benefits by impairment not long before I came along (my mum became a housewife when she married my dad because that's what women did in the 70s). I haven't just read it in the right-wing press. I've heard it from people I know. I've even heard it from other disabled people.

They may not have directly used the words "Lisa Egan should not be here," but it was what I inferred from their statements.

I remember the times my father said it to me when I was growing up. He was, and still is, someone that demands to be the centre of attention at all times. When I was a child my mum prioritised me over him and he resented the little brat getting more of his wife's attention that he did.

It's a powerful statement that haunts you; knowing that people think you shouldn't be here.

I remember a very long time ago seeing a mother on the news with her young child saying that if she'd known her daughter was going to have Spina Bifida she'd have had a termination. That child knows that not only is she unwanted, but she's so unwanted that her mother desired to tell the country about it. Her main passion was dancing to pop music; and at her age (IIRC she was about 4) that should have been all she had to worry about. She shouldn't have had to have heard from the people closest to her that they'd prefer her not to be around.

This week there have been 11 living children hearing all about how they shouldn't have been born. In the unlikely event that there is an afterlife where you look down on the world you left behind; there are a further 6 children hearing the same words.

The press is full of stories about how Mick Philpott's children were only born to milk the welfare state. Right wing commentators are queueing up to appear on the news to talk about how families shouldn't have so many children. There are, of course, plenty of people claiming that people living on benefits shouldn't be having children at all.

The most hurtful thing has got to be that these 17 children have been singled out by someone at the heart of government, the Chancellor, as being "a lifestyle" that needs to be "handled". Not human beings deserving of respect. Not people that have lost siblings. Not lives that have been cut short. But a problem that needs to be "handled" by government.

When I've read in the press that parents on benefits shouldn't have kids I knew they weren't talking about me directly, they were talking non-specifically about a group of people I happen to belong to. The same when I read tweets about how babies with genetic conditions shouldn't be born. But this week, all week, there have been 11 children hearing very loudly and clearly every time they turn on their TV that they - those children whose father is Mick Philpott - should not have been born.

I can't even imagine how it feels to be told on the front page of every paper, and on every news bulletin, that you - specifically you - should not exist because of someone you happen to be related to. Someone you didn't choose to be related to. And at a time when you're grieving for the loss of your siblings to boot.

The lowest of the low

Being female, gay and disabled¹ you'd think I'd experience 3 times as much discrimination as a disabled but otherwise socially privileged bloke, right?

Wrong. All the discrimination I ever experience is disablism.

Not only is experiencing daily disablist acts (like not being able to get into a brand new café) frustrating, there's also the constant reminders that discrimination against disabled people provokes the least outrage among society at large out of all the isms.

Easter weekend 2009 there was the amazonfail brouhaha. It doesn't matter if someone from amazon.fr pressed the wrong button which "accidentally" meant rankings were stripped from any books to do with homosexuality or sex and disability. Where the conscious and deliberate disablism occurred was in the web/media frenzy. Everyone on the planet cried "homophobia" in their tweets, blog posts and news articles. Only a tiny, tiny smattering of people gave a crap that books on disability and sexuality had been affected too.

A couple of months ago the LGBT Labour party conference were refused drinks in a London pub. The story of homophobic discrimination spread across the internet like wildfire and was global news within a couple of hours. My gut reaction upon reading the story was to tweet Greencoat Boy: The gay in me is horrified. The disabled in me says "so what? Disabled people get refused service DAILY and it's not news.".

Two hours later my point got illustrated perfectly. I read this story of a wheelchair-using woman being refused service in a restaurant on the very same day. Naturally I tweeted the link. The story of a homophobic bar manager was tweeted and retweeted thousands and thousands of times. How many people retweeted the tale of a disablist restaurant manager? Two. Not two thousand; just two.

Yesterday it was news that a niqab-wearing young Muslim woman and her friend were refused entry onto a bus for "being a threat". I'm refused entry to roughly one in 5 of the buses I try to board because I'm a wheelchair user. Very often the driver doesn't even have the balls to tell me he's going to refuse me access, he just pulls up at the stop, doesn't get the ramp out, allows able-bodied² passengers to board and then drives off.

Where's my news story in the top 10 on the BBC News website? Where's my "urgent investigation" into the discrimination I faced?

Superaleja once referred to "multiple layers of discrimination, like a crip-fail onion," which I think perfectly describes the 3 situations I've written about here. First disabled people get discriminated against, then there's the second layer of discrimination where we're denied the public outcry of horror that would be extended to the same discrimination being committed against any other minority group.

---

¹ I have been told on many an occasion that it's a shame I'm not black too. During my stand up days (before I became too ill to carry on) I had an 'anti-fan' in Brighton who came to see me every time I gigged in the city to accuse me of being racist for telling the story of how daft people sometimes say "it's a shame you're not black." Being so hated really made me feel like I was doing the job properly.
² I'm deliberately using the phrase "able-bodied" as the opposite of "physically impaired". There's a chance that some of the people boarding the bus are both disabled and able-bodied.

Hate

On the International Day of Disabled People I mentioned that the EHRC had used the day to launch an inquiry into disablist harassment in the wake of the Pilkington murder/suicide.

Something occurred to me a couple of days after posting: Plenty of disabled people have been killed in hate crimes - people like Brent Martin who was killed over a bet - but they hadn't really entered the consciousness of non-disabled people. What made the "Pilkington case a Lawrence moment for disability hate crime"? Eventually it hit me: Fiona Pilkington was not disabled. She committed murder/suicide out of frustration at the disablist harassment of her two disabled children. For the first time disablist hate crime was responsible for the death of a non-disabled person. And I think that's why the public suddenly gave a shit. If disablist hate crime was still only killing us mere disableds, no-one would care.

Fortunately disablist hate is now getting the attention of both non-disabled people and at least one disabled person who had previously thought that disablist hate crimes were fiction.

This week we've had the sad news of the death of Mancunian David Askew. Unusually for this kind of story it has been news. For a while yesterday (Thursday) the BBC story about his death topped the list of "most read" stories on the site. Many publications note that he was 'tormented to death' yet I've not seen one article remark that the harassment was probably fuelled by disablist hate.

Also this week we've had the rather ridiculous Ofcom decision that TV stations should broadcast the word "retard" because to not do so would be a breach of viewers' human rights. In other words, encouraging disablist hate crimes is good. Mencap have launched an Email campaign against Ofcom's ruling

Today the Independent ran a column filled with offensive language, praising Ofcom's decision, and slamming 'political correctness'. Yes, the same paper that also today declared David Askew's death a "tragedy" and asked "Could nothing have been done to protect him?" The Independent's right hand wants the right to call disabled people offensive names while the left hand wants to protect people like David Askew. Apparently the editor is completely oblivious to the fact that Askew was no doubt repeatedly called a "retard" during his decade of harassment.

The Pilkington case might have brought the public's awareness of disablist hate some way forward but with Ofcom and the Independent declaring that disablist hate speech is not only acceptable but a good thing we've still got a long way to go.

Edit: For those of you who think that not wanting to be subjected to hate speech is "political correctness gone mad;" Here's Johnny Knoxville (really not known for his PCness) and his friend and colleague Eddie Barbanell on why the word "retard" is not acceptable:



Edit 22nd March: Today there are finally a couple of news stories containing both "David Askew" and "disability hate crime" on bbc.co.uk and in The Independent.

"There were commodes as well."

Using a commode in front of half of Central London?

I think I'd rather wet myself...

"I would've gotten away with it too if it wasn't for those pesky disabled people!"

A couple of months ago I blogged (very briefly) about Katie Thorpe.

I've been offline for the past few days. I haven't been doing anything interesting... The cat and I took up Synchronised Sneezing, I've read a few essays about Buffy, but mostly I've just been sitting on the sofa watching CSI (hey, I'm doing a Masters in Cult Film & TV... watching CSI is therefore technically studying).

Not having been staring into my computer screen means I've not been keeping up with the news... I rarely watch it on TV or listen to it on the radio, I get all my news from online sources.

So, I was both shcoked and pleased to switch on my computer this morning to find that I had an Email from Scope. Shocked because they're not my most favourite of charities so I was stunned to find myself on one of their mailing lists. But pleased because the Email was the first time I'd heard the news that Katie Thorpe has been spared uneccessary surgery. A quote from Katie's mother in that article that would be funny if it wasn't so disturbing:

"People who don't know Katie, who don't fully understand our situation have actually been swayed by the minority of the disability rights organisations."

Damn those pesky disabled people fighting for the right to not be needlessly mutilated.

In recent months I've started to notice something quite chilling going on. All minority groups have their hate-filled opressors, and disabled people have more than most. But, recently, the people shouting the loudest about why disabled people shouldn't be allowed human rights are the parents of disabled children!

I read an article, or perhaps it was a 'letters to the editor' type thing by a parent, or parents of autistic children. They were basically claiming that the National Autistic Society is bad and wrong and fails to support "real" autistic people. Why? Because they employ autistic people. According to the article people with autism know nothing about it. They claimed that the only people that truly understand autism are the parents, and people with autism have no right to claim that they do know anything about it. I can't remember where I read this, but, if it rings a bell and you know where I can find this story, please comment.

That a parent can claim that their children shouldn't have the right to speak out for themselves, or that their children shouldn't have the right to avoid unneccesary surgery simply beggars belief.

Fortunately, for once, the disabled people are coming out on top.

2007 started with Ashley X hitting the news. This spurned several wanna-copycat cases, like Katie.

Hopefully 2008 beginning with the news that Katie is safe will bring a better year for young disabled girls everywhere.

Mice genetically altered to not fear cats.

Why?

Mice aren't scared of the smell of cats anyway! If they were, they wouldn't keep sneaking into my flat and winding up suffering from death by cat's teeth.

Unless some of these specially bred mice escaped and managed to make their way all the way from Japan to the Somers Town area of London...

The little girl who would never grow up.

Today's Dictionary.com Word of the Day is bowdlerize.

I saw the following synopsis on the RSS feed this morning:

"To remove or modify the parts considered offensive."

I'm aware that the word is usually used in relation to literature and the like, but the wording of that synopsis reminded me of something I've been meaning to write about.

You've probably all read by now about the case of Ashley, the girl whose parents fantasy of turning their disabled child into Peter Pan was realised.

This poor girl has been on my mind a lot since the news story first broke. Her, and all the subsequent children who are going to be mutilated for no real reason except that their parents find the idea of a disabled child "cute," but a disabled adult "repulsive."

Don't believe that that's a mindset that exists? Compare the number of charities raising money to buy appropriate equipment such as decent wheelchairs for children compared to the number supporting adults. Compare the income of those raising money for cute kids compared to those raising money for icky gross adults.

Ashley's parents say:

"In our opinion, only parents with special-needs children are in a position to fully relate to this topic."

Thus completely disregarding the opinions and feelings of disabled people (including their daughter) because we're not as important as the non-disableds most crips crawled out of. A fairly typical non-disabled attitude of "I know about you better than you ever possibly could."

Despite the fact that Ashley's parents (who prefer to remain anonymous, presumably to protect them from claims of child abuse) want disabled people to be small, seen and not heard; unsurprisingly disabled people the world over are taking Ashley's side rather than that of her parents.

When a parent is prepared to mutilate and chemically alter their child to such an extent, it's obvious that the child isn't properly cared for. The parents state in their blog that:

She has a sweet demeanour and often smiles and expresses delight when we visit with her;"

and:

"We constantly feel the desire to visit her room."

Visit with her? You're saying the reason you butchered her was so she could continue to live with you, and you could "care" for her at home... yet she's not integrated into family life? You have to "visit" her? What sort of childhood is that?

They go on to say that as a result of the shrinking drugs:

"[Ashley can be] taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc)"

I'm sorry, but there's no reason someone of whatever size can't sit in the family room or go on trips. Wheelchairs and adapted vehicles so a passenger (and even a driver, though with the mental capacity of a 3 month old, I think it's safe to say that Ashley won't be picking up her driving licence any time soon) can travel in their chair have been invented. Hell, I'd have stolen my parents adapted van and given it to her parents if I could have prevented her from being put through this. (My mother reading this is probably now planning on removing my name as a driver from her car insurance policy).

And as for:

"She will continue to fit in and be bathed in a standard size bathtub. Since Ashley can’t sit, she needs to lie down in the bathtub. Without the treatment eventually she would stop fitting in a standard size bathtub."

If it was my child that I loved, I'd buy a bigger bath. I'd fork out to get a bath custom made if I had to (and, let's face it, it'd probably be cheaper than all the butchering, which I bet your medical insurance didn't cover).

These people are desperately clutching at straws to justify what they've done to their daughter. Unfortunately for them, their reasons are transparent. It comes back to disabled kids being cute, disabled adults not. They wouldn't want an unsightly adult that drools and wears a nappy in their family room, they'd be ashamed and embarrassed to take that adult on trips. But as long as she looks like a child and they can pass her off as one in public, she'll remain bearable to have around.

"To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemotherapy or radiation therapy)."

Erm, yeah... right. Forgive me, but aren't chemotherapy and radiation therapy life saving or at least life prolonging treatments? How much longer is Ashley going to live because you whipped out her uterus, whipped off her nawkes and fucked with her hormones. Oh, yeah, that's right:

"She is expected to live a full life."

And was before you started paying doctors to tamper with her.

"There was one legal issue that we needed to investigate related to "sterilisation" of a disabled person. Upon consultation with a lawyer specialising in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so."

I never knew about that piece of legislation existing in America. I'm relieved to read it does. I read on an internet messageboard about an Australian woman with the same impairment as me who, aged 4, broke her leg whilst on holiday and so went to a different hospital than usual. The doctor treating her leg told her parents "we might as well do the hysterectomy while she's here. You don't want a child like this menstruating." Her parents had the sense to scoop her up and run, but she reported that she'd heard that the same doctor had sterilised other young girls with OI, with disastrous consequences.

What does he think's going to happen if girls with OI are left in one piece? That we'll break our pelvis' changing tampons? That we won't be able to maintain a sanitary regimen if our arms are plastered? (I know from personal experience that it's possible to change a tampon even if your dominant arm is in a pot).

Coming back to Ashley, what about her future? What about the people that have woken up from a persistent vegetative state after being given sleeping pills? What about the people thought braindead who have proven that their brain is/was alert the whole time? What about all those autistic people who were thought for most of their lives to be a "vegetable" who turned out to be exceedingly bright when given the right communication tools?

I'm not saying that Ashley will one day suddenly "wake up" and "be normal". But medical advances happen every day, and what about the possibility that she "might"? What if she does and wants to marry and have kids. Shouldn't the law against involuntary sterilisation have protected her too?

"We also had concerns about Ashley's breasts developing and becoming a source of discomfort while [...] strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues."

They are aware that chest straps for busty ladies have been invented, right? I've seen them. I have a well endowed friend who has one fitted to her wheelchair. Originally she had fitted a chest strap designed for a man, and, as I recall, she did find it uncomfortable (and if I'm honest, it did make her boobs look kinda silly too). So, she had one designed for women fitted. Problem solved, cheaper and much less painful and intrusive than surgery. Did Ashley's parents consider any alternatives to a knife?

"she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts."

"The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley's appendix acts up, she would not be able to communicate the resulting pain."

So, how is she going to communicate the pain of a broken bone? When she screams, how are you going to know what's wrong with her? As Flash points out "And how much research has been done into the effects of aging on a child's body? I expect it will bring its own problems sooner or later - osteoporosis for a start."

Her parents claim that:

"We learned that attenuating growth is feasible through high-dose oestrogen therapy. This treatment was performed on teenage girls in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects."

But, erm, "no long term side effects?" The women who had that treatment will still only be in their 40s now. And did you research as to how many of them are developing Osteoporosis at that age? Or how severe it is in comparison to other menopausal and post-menopausal women?

Ashley's parents and doctors did at least have the sense to leave behind her ovaries, so she has her hormones which will help protect her against Osteoporosis, but even before she'd had her hormones messed with, she was still a high risk candidate for it because:

"We call her our "Pillow Angel" since she is so sweet and stays right where we place her - usually on a pillow."

Here's news for ya pal: Pillow Angeling ain't good for ya bones. It used to be believed that babies and children with Osteogenesis Imperfecta should be put on a beanbag or pillow, and just left there. Not touched, not encouraged to move, just left still. Until it was found that it was worse for the children concerned (though some doctors who haven't updated their medical knowledge since they became a doctor many moons ago still believe that. I understand that OT's specialising in OI still throw a lot of beanbags in the bin). See, movement helps increase bone density. Not moving doesn't.

I know Ashley doesn't have OI, but she's still immobile, and kids without OI benefit from movement, especially impact exercise.

I appreciate that Ashley won't be running any marathons, but her parents and doctors must be aware of the negative impact that immobility will have on her bones, and so surely they shouldn't be doing anything which may jeopardise her bone health even more? Especially given her inability to communicate where it hurts?

"Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it."

If Ashley is obviously in pain, and you know it's because she's got her period (which you will, you'll see the blood when you change her incontinence pad), why not resort to a less invasive option, one women have resorted to for many years - painkillers.

"Ashley spent four days in the hospital under close supervision and, thanks to aggressive pain control, her discomfort appeared minimal."

So she's not allergic to painkillers then? So, how about some painkilling drugs in a liquid suspension mixed with her food and administered via her feeding tube? I've just taken some paracetamol (acetaminophen for any American readers) for period pain. Works like a charm. And even if it didn't, there are stronger painkillers available from your doctor, all less drastic than major surgery.

"Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse."

I'm so surprised I've not read any objections from feminists about this. It only seems to be disabled people offended by what's been done to this child. What her parents are saying is that the way to prevent a woman from being raped is to fix the woman, to remove temptation. Then all is right with the world.

If a child-like body makes a female unsexy, how do Ashley's parents explain paedophilia?

"Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused."

So it's OK to rape a woman who can't tell on her abuser as long as she can't get knocked up? What about the risk of sexual transmitted infections? Or is it OK for a severely learning disabled woman already to lose her mind to syphilis?

If she were my child, I'd do everything I could to protect her from abuse (and I don't mean removing temptation by lopping her boobs off). I'd fill my house full of surveillance equipment if I had to so I could spy on her "caregivers".

It's not often I agree with the opinion columns by Dr Tom Shakespeare, but his article on Ashley is great. While most of the world is trying to convince midgety crips that we should be taller so we can reach the top shelf in the supermarket ourselves (back to my old peeve about the feta cheese) rather than making the world adapt to us, Ashley's parents want one of us shortarses. I'm kinda flattered in a way that according to non-disableds that it's now OK to be short - that short is the new tall.

"Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."

It all comes down to aesthetics. Disabled kids are cute, disabled adults are gross.

"Ashley is a beautiful girl whose body is developing normally with no external deformities."

Well, I'm about to drag my deformed, unsightly, disabled adult self into the bath. Night kids.