Bonsai trees in the Marriott lobby

One thing led to another, this afternoon, in the Marriott Denver-Tech-Center hotel lobby.  A baking hot afternoon. A war between suburban hotel shuttle services. I was left waiting for about 45 minutes to get from the conference hotel (on the edge of a 12 lane motorway), to the hotel I was staying at (in the middle of nowhere). A hell hole industrial wasteland of nowhere. I ain’t joking.

I hung out in the lobby which was the size of a small football pitch. Chatting to the ‘bell/concierge’ person every now and again. She was working her socks off trying to negotiate ways out of the hotel for a constant stream of large and small groups of people who wanted to go somewhere.

I watched delegates from the Vision of the American West Bonsai Convention carefully wheel their trees away on luggage trollies, and vaguely regretted not spending more time at their exhibition. Various delegates from the disability conference I was attending, milled around, on foot, in chairs, on scooters, chatting, signing, discussing where to eat that evening. There was a lively, end of the day conference buzz. I met a delegate from Witney who had emailed me months ago. Funny old world and all that.

Three young men came through the revolving doors dressed in US naval uniform. They visibly responded, seeing a small group of conference delegates standing by the entrance. One of them stopped, momentarily and stared. He was given a brief hand squeeze on the shoulder by his colleague. There were the tiniest of half grins, a small cough, then faces were rearranged into studied disinterest.

All in the Marriott lobby. On a baking hot afternoon. That’s all.

The ‘good life’ and sibling interactions

Regular followers of this blog (love you all) will know that LB’s future plans (and lack of opportunity, ‘capabilities’, ‘a good life’) are weighing heavily on me at the moment. This is causing me to examine everyday family life closely.

So. I had a meeting in London today then picked up LB from his after school club on the way back. Tom (12) was just home after playing football in the park with his mates. Later in the evening, Tom came downstairs to say goodnight. This is a new development. He no longer expects or wants us to go and say goodnight to him in bed. Half an hour later, LB was sent to bed. After a series of verbal (nudges) orders to “clean teeth, wash face, get pyjamas on” he was ready for bed (and released from our surveillance).

Then I could hear a series of exchanges. Tom was asking LB to turn off his light. This involved various prompts, all cheerful. After an encouraging, responsive exchange, the light was turned off. A further “goodnight” exchange followed. Sorted.

I started comparing Tom’s interactions with LB, with our exchanges with him. Tom, Rosie, William and Owen all talk to or with LB differently to us. As do their mates. They don’t have the baggage of the ‘special needs’ label or of growing up in world in which difference was largely hidden away, influencing their exchanges. They chat. They talk to him as a brother or a friend’s brother.  They negotiate, or adapt their chat, to accommodate LB, but it’s still chat.

I can’t help thinking that we need to learn from their chat, their interactions, their casual yet ready acceptance, if we want to allow or enable dudes like LB to lead ‘a good life’.  It’s just difficult when his whole life is framed within a ‘special needs’ space with alienating structures and processes dominating it.

Language, careless statements and exclusion

During today’s Prime Minister’s Question Time, Cameron made the statement; “We know that through the phonics scheme that my right hon. Friend the Secretary of State for Education (eh? who?) is leading on, that we can teach reading so that no child is left behind.”

No child? No child? Eh? What about all the kids that will never be able to read Dave? Wow. Excluded. Totally written out of the picture. A whole section of the population. In a statement recorded in Hansard.

I got to thinking. Does that mean that those children who will never be able to read are a different sort of child? Not ‘children’ at all. As we know it (Jim)? How could he make such a statement, particularly having had a disabled child himself?

Mmm.

My thoughts led me to this position; Cameron talks an awful lot of crap all the time, but in this instance, he is probably making a statement that would be received, uncritically or even unreflectively, by many. He is making a statement that would probably not raise an eyebrow if you didn’t have a disabled child, or be disabled yourself.

For parents of disabled children, and others, the exclusionary dimension to statements like this, are regular reminders of how narrow accepted types of children are. Statements like this, whether by an authority figure, next door neighbour, best mate or the person sitting next to you on the bus, happen all the time. There are children. And there are children who are erased from mainstream consideration. It comes back, in part, to Mary Douglas and festering. 

This leads to all sorts of emotions – anger, distress, rage, depression, fury – relating to the consistent, collective, careless dismissal of our children. Our children, just like any other children. Only different. It’s hard to put into words,  but it’s like not only being regularly told that your child is crap in various ways, over the years, but also  to turn round, when you ain’t expecting it, and see that once again, they have figuratively been tossed onto the rubbish pile. I don’t think people are being insensitive really. Often it’s an unintentional act or response.

There was an interesting article in the Independent today about the proposed changes to educational provision for ‘SEN’ children. This was summarised (I’m guessing) in a title created by someone other than the author, Lisa Markwell;  It’s her needs that make my daughter special. For an article to be included in mainstream press about disabled children, I always get the sense that the editor, or sub-editor, tries to cuddle it up (or snuggle muffin* it) in some ‘expected’, ‘slightly sensationalist’ language that is crap. I can imagine that people who write these pieces weigh the benefits of getting something ‘out there’ to extend awareness and understanding with a shit title that, at the same time, reinforces existing understandings and awareness. It underlines the same dominant understanding of difference that needs to be coated with a saccharine pill to to be palatable.

Anyway, I’m going to keep making visibile these instances. Probably tediously to a lot of people. But in the hope that the odd person thinks ‘Hey, Dave, what about those kids who won’t be able to read?’ And reflect on what that means.

*Thanks to Molly for this expression.

Festering

Mary Douglas. An old favourite of mine. Author of Purity and Danger. Mary (I think I can call her that) argues we categorise things in order to create a sense of order. That we can’t categorise, is pushed to the margins. And becomes ‘other’, creating feelings of revulsion in “us”. Of matter out of place. Bit like walking round a cattle field then putting your wellies on the kitchen table. Or cleaning the kitchen sink with the toilet brush.

Ah. Why am I rambling on about this? Why indeedy. Because of two articles published today.

First, Ian Duncan Smith wrote about his determination to get rid of Disability Living Allowance; “I’m not too scared to light the fuse on disability reform” (now with inflammatory sections removed). Making a series of inaccurate statements, and drawing on made up statistics, he said;

“70% [of people on DLA] had lifetime awards, which meant that once they got it you never looked at them again. They were just allowed to fester.”

So here we have the Work and Pension Secretary suggesting that disabled people ‘putrefy and rot’ or ‘generate pus’. Pus. A perfect example of matter out of place. And one that engenders revulsion.  Not only that, but disabled people choose to fester and “we just let them”. The old us and them that is becoming the defining feature of this government.

Cristine Odone hot on Dunky’s toes, produced (in about 15 minutes by the look of it) a nasty, made up little piece; “Smith must not give in to the disability bullies.”

Now it’s not clear whether these disability bullies are part of the “truly disabled” she refers to (the blind who get less than the drug addicts and alcoholics), or the gang of “back ache fakers who stay off work, earning money to do so.”  Whatever, they are prepared to take extremist tactics to stop changes to benefits. These tactics? Marching in central London at the weekend.

Being labelled cruel and insensitive to the plight of others is a politician’s nightmare. The disability lobby includes politically-savvy activists who know this, and know just which buttons to press. Like PETA, the animal rights lobby, these campaigners are prepared to fight dirty in their effort to embarrass the authorities into doing a U-turn. Emotional manipulation and shock value are routine in their demonstrations; this will only increase if IDS stands his ground.

Well Odone is, like IDS, reinforcing Douglas’s work very nicely. She talks about playing dirty and compares disability campaigners to animal rights campaigners. I’m making no judgements about animal rights activists here, but I don’t think throwing fake blood on the pavement, or wearing gloves to symbolise cutting off hands, compares to some of the strategies employed by PETA and other organisations. Far from it.

Douglas suggests that ‘we’ can respond to ‘anomalies’ negatively or positively;  ignore or condemn them or effectively embrace them by creating a new reality that includes them.  Dunk/Odone’s position is clear. Condemnation.

Me? I’m left feeling revulsion. About a government who are increasingly matter out of place.


So to the future..

I’ve been trying to avoid thinking about this, because the future does not look rosy at all. But it’s gotta be done.

The facts:

  • LB is 17.5 years old.
  • He can stay in his sixth form until he’s 19.
  • There is a possibility he can attend a local college for a one year, two day a week, course.
  • After that, nothing.

Considerations:

  1. What is this funny, hugely bright in some very specific ways (but not in any ways that are recognised in the workplace), young man going to do with his life?
  2. Whose is responsible for his care when he’s an adult?

I dread to think what LB is going to do. His current social worker (soon to be replaced by a transition social worker) said that the best we can hope for, is to make personal contact with a local small business/enterprise and organise paid carers to support him in some activity with them. Wow. The provision of support and services for learning disabled people is clearly cracking in the 21st century. I can’t see how this local work activity (if any were available) can be organised without a huge investment of time and goodwill. Whose time and whose goodwill? And with a high level of ongoing management. Alternatively, he may receive enough of a care package so that we can employ someone to do something with him on a daily basis. Something? What? And where?

Caring for someone in this country is, to be blunt, a pile of crapshite. The use of the word ‘care’ muddies things and allows a persistent level of exploitation that is completely unacceptable.  Carers are paid £58.45 per week on the basis of a 35 hour week. How we can possibly distil the work carers’ do, often 7 days a week, on call for 24 hours a day, into a ‘working week’ is plainly wrong. If you earn over £100 a week, you don’t qualify for carer’s allowance. It’s an all or nothing jobby. And as for carer’s assessments (introduced circa 1995) to enable carers’ to say what would make caring easier for them?? I’m still waiting to have one.

Ironically, LB will probably (possibly? who knows with the current cuts in welfare) be given a care package involving direct payments that, in principle, allows him (that is, us) to buy care from external people. These people are currently paid between £7 (daytime) and £10 (evening) per hour. Unlike informal carers, there is a recognition that working in the evenings should involve a higher hourly rate. The rule is that direct payment cannot be paid to anyone living in the same house as the person they work for. Mmmm. Well we wouldn’t want to acknowledge the work informal carers do, would we? Direct payments also involve a lot of bureaucracy, recruiting staff, form filling in, tax, national insurance, and so on.  Employing people involves time, interaction and a blurring of public and private boundaries in the home.

As I work full time, I don’t get carer’s allowance. There is no acknowledgement of the work I/we do, and will continue to do, looking after LB. There is no recognition that, unlike most parents of 17 year old children, one of us still has to be at home every day, ready to let LB in or collect him from after school club. This will continue for the next two years until he leaves school. And then what? He will, if lucky, be occupied two days a week at college for a year. No doubt starting around 9.30am, finished by 3pm with extensive holidays thrown in. He can’t be left home alone, so there are serious implications for maintaining full time employment.

I’m not overly optimistic about the paid carer situation. LB’s recent 12 week stint with a ‘peer buddy’, organised by a local care agency, was filled by a 50 year old man. At this point in time, I refuse to even think about a day centre. Years ago, LB used to say that he’d been to day care with Mr Galpin. It turned out that the social services transport he had at the time (the ill bus), collected a very elderly man after LB and they took him to the day centre before taking LB on to school. The thought of a 19/20 year old young man hanging out in that environment is a beyond dread kind of thought. It ain’t gonna happen.

So what are we left with? Fuck all really. Patchy bits of uncertainty and an unacknowledged expectation that parents will do a hell of a lot of work to make do and mend, on a daily basis. As for what LB will do with his life? That clearly is not an important feature of policy or practice.

Gervais, Derek and the dog ate my homework

It’s Easter Monday, and I was going to do some work but for two things that happened. One, LB lost the bus ticket from his earlier trip to the bus museum with his carer. Two, Ricky Gervais has defended his new show, Derek in an interview. The combination of a long and fruitless (torchlit) search for the missing ticket, and the distaste and discomfort created by Gervais’s careless defence of his show, have left me out of working sorts.

Instead, I’m going to write about Gervais and Derek. The show is based on the character, Derek Noakes, “a simple man working in an old people’s home”. There are only short trailers available*, so maybe I will be retracting this in a few days time, when it is aired in full. I sincerely hope so.

Of course, I’m writing from a particular position and, quite possibly, fifteen years or so, before I became intimately acquainted the world of dudes like LB, I may have found the show funny. I’ve re-watched various TV shows and films that I originally found hilarious and winced painfully. Just as I wince when I hear friends, colleagues or others making careless or derogatory statements about difference. I think it’s fair to say, mainstream life generally remains a long way off understanding disability, but in particular, learning disability.

The full interview with Gervais can be read on Nicky Clark’s blog, together with a link to the trailer. I thought I’d just have a little looky at one extract here.

Nicky Clark asks “Why does the belief Derek is learning disabled persist?”

Derek is a fictional character and is defined by his creator. Me. If I say I don’t mean him to be disabled then that’s it. A fictional doctor can’t come along and prove me wrong.
He’s different. But then so are a lot of people. He’s not the smartest tool in the box but he’s cleverer than Father Dougal, and not as different as Mr. Bean. He’s based on those people you meet who are on the margins of society. Nerds, loners, under achievers. If he had any specific and defined disability I would either get an actor with that disability to play the role or I would make sure I was an expert in that disability and the best person for the job.

So Gervais is the creator of Derek, and if he decides Derek ain’t disabled then he ain’t. And no fictional doctor is going to prove him wrong. Mmm. This is a funny old argument, that is easily dismantled, but it is important for Gervais to sustain, because it supports his premise that he ain’t “pretending” to play a learning disabled character.

Differentiating between disabled (diagnosed), non-disabled (undiagnosed), or “simple” as the BBC flags the character, is kind of meaningless. Gervais may be hiding behind a group of older people who have not been ‘officially’ diagnosed with learning disabilities, because these labels weren’t around when they were kids. Hence the BBC labelling of a “simple”man.  But this is sleight of hand and an unsustainable distinction. Gervais plays the character as if David Brent is pretending to be learning disabled, with shifting levels of articulation and a lot of gurning. I suspect this portrayal will spread speedily through secondary schools, and wider, inspiring a new generation of ‘Derek’ type impressions aimed at learning disabled people.  Gervais, the “intellectual comedian” as he defines himself, has gone for an obvious, stereotypical representation along the lines of the “mong face” images he recently tweeted. That he is ignorantly (at best), but more likely deceitfully, trying to argue otherwise, is pretty crap.

Going on to say “If [Derek] had any specific and defined disability, I would either get an actor with that disability to play the role or make sure I was an expert in that disability and the best person for that job” is meaningless guff. Learning disabilities are unspecific and often undefined, other than by the broad term; learning disability. Becoming an expert in a particular ‘disability’? Well you crack on matey, but it may take a while and probably requires a dose of personal experience.

I’m a big advocate of difference rather than deficit, and strongly argue for an inclusive society in which diversity is celebrated. I don’t think Gervais really is. He is just offering a lame defence for a show that is all about him. Ricky Gervais. “The creator”. The BBC ran the story of his defence of Derek today, and he has been tweeting the link to his followers, urging them to read and retweet the link to the interview. If he was hoping to present himself as some sensitive, aware, creatively original and intellectual writer, he’s failed badly for me. It’s on the level of the dog ate my homework.

* Turns out that all previous incarnations of Derek Noakes have been removed from the internet. I can imagine it is a task and a half to cover the far reaches of the web and erase past traces of video snippets.

Jobcentreplus (or what the fucketty-fuck?)

Well. Where to start with this baby? First, I am going to try not to swear (other than repeating any swears that happened during reported naturally occurring talk. Second, this story follows on from The Atos Questionnaire, so if you ain’t familiar with that sad and sorry tale, click here.

So LB is now in receipt of Employment and Support Allowance (despite a news blackout that he was actually entitled to it).

All good in the end then? Well maybe. If he actually received it.

Today I dredged deep (after a lovely, lovely day at an autism conference in London yesterday) and found the energy? resources? reserves? strength? I don’t know what I found really, just something (which is remarkable after about 14 years of consistently shite support/sevices) and called Jobcentreplus to ask why, after the initial back payment of three months, LB hadn’t received a bean.

“Hello,” said JCP blokey, “I need to speak to LB to go through some security questions first.”
“Mmm.. not being funny, but unless you want to ask some Darth Vader and the Death Star Canteen type security questions, you’re probably better off asking me.”
“I need to speak to LB. He is in receipt of the allowance.”
“He won’t be able to answer your questions. He has severe learning difficulties.”
“Ah.. Oh yes, I see now. I should have asked these questions in a different order, then I would have known. Then I could have avoided that embarrassing question.”
“Yeah.”
“So, let me try and work out what’s  happened here then. Oh yes, there is a stop on the account because the sick note provided is dated from 16 November to 16 February. You need to go to the GP and get a medical certificate to cover the period from 16 February.”
“Er, we originally provided an indefinite medical certificate in February and we were asked to get a second one covering November to February. We sent that ages ago.”

Let’s take a moment here to reflect on what I’ve just written.

  1. LB is given an indefinite sick note by the GP. What is an indefinite sick note?
  2. Despite having an ‘indefinite’ sick note, the GP had to produce a second sick note to cover the three months before the original sick note. Backdating an ‘indefinite’ sick note? What does that mean?
  3. [1] and [2] had to happen despite 14 plus years of medical, health and social care reports detailing in painfully minute detail, LB’s ‘deficits and shortcomings’ (in official eyes).
  4. Despite [1] and [2] (and even without [3]) we then get a 20 odd page Atos questionnaire to complete to provide evidence of the efficacy of the ‘indefinite’ sick note.

Well, the swear constraints can fuck right off. This system is beyond shite. And horrendous to experience.

So, back to JCP blokey.

“Oh, I see what’s happened. When they got the second medical certificate, they entered that, and overlooked the original certificate. That’s here but they’ve only entered the November to February dates. That’s why there’s a block on the account.”
“Oh.”
“Mmmm. I need to sort this out.”
“Bloody hell.”
“Well yes, I’d have probably said something similar myself in your shoes.”
“Bloody hell.”
“I’ll email them straightaway to sort this out. It will only take about 3 hours to change it. The account should then be unblocked.”
“When you say them, who do you mean?”
“Oh, the benefits people. That’s who has to sort this out. I’m just a contact person on the helpline.”
“Thank you. Goodbye.”

What else is there to say really?

The Atos questionnaire

Many of you will be, luckily, unaware of Atos, a French IT company. Googling Atos will produce mountains of complaints and criticisms about Atos Healthcare, a divison of Atos, that has been awarded the contract to assess scroungers’* ability to work on behalf of the Dept of Work and Pensions (DWP). To save you the task, here is a good overview of the Atos crapness. Well this company is raking in the casheroony in a big way. Bit like A4e (Action for Employment) and the infamous Emma Harrison, until recently, Cameron’s families *cough* *cough* *cough* tzar.

So, back to Atos. And LB. Well, as I’ve mentioned here before, I recently found out, through mates (rather than the enormous machinery of health, education and social care services) that LB has been entitled to Employment and Support Allowance since he turned 16 over a year ago. We can backdate claims by three months.

To start the claim, I did a phone interview with JobCentre Plus (JCP) which lasted about 40 minutes and included mind boggling questions like “Who is the head of your household?” The next step was to get a sick note (???) from the GP.  He sensibly gave LB an indefinite sick note. This was returned by JCP as it needed to be backdated by three months. Back to the GP for second sick note. Indefinitely sick since November 2011.

So a medical practitioner has authorised LB’s removal from job seeking indefinitely. But that’s no longer enough. There is a Limited capability to work questionnaire to fill in, so that experts (undefined) from Atos can judge whether or not LB has legitimate access to allowances in place of paid employment.

Well. Where to start? It’s 20 pages long, covering questions about medical condition, treatment/medication, physical and ‘mental, cognitive and intellectual functions’.

Questionnaires are always flawed but this one is legendary in its crapness. I feel strongly that if someone can’t fill in the questionnaire themselves, because they have severe learning disabilities, then it’s a done deal. Bin the questionnaire, it’s pretty obvious that this person is going to have a limited capability for work. I’m not suggesting at all that people with severe learning disabilities are not ever capable of paid employment, but that some limiting parameters are in place in terms of the engagement with the process. And if they can’t engage with the process, some other poor buggar (often parent) will have to instead to fill it in on their behalf.

Compounding this, the content of the questionnaire is baffling and ultimately meaningless. For example;

Can you learn how to do a simple task like setting an alarm clock or a more complicated task like using a washing machine?

How is setting an alarm clock a simple task? You’ve got to be able to tell the time for starters, before you even turn to the clock. Just a small consideration I suppose in the experts at Atos’ eyes.  Teaching LB the time has been an ongoing process for the last 2/3 years and no, the boy ain’t cracked it yet. Let’s park that (minor) detail for now. Do Atos mean a manual alarm clock, where you have to scooby round some second set of hands to the time you want the alarm to go off? Never an easy task. Or a digital alarm clock??? It is ill-thought out nonsense.

The next question is “Initiating actions” and asks; Can you manage to plan, start and finish daily tasks? Possible answers – never, sometimes or it varies. Again, gaping holes here. Do they mean unaided, or with prompts/support? Do they mean ‘sensible’ plans/tasks, like ‘today I’m going to buy some bread and milk’, or less ‘sensible’ plans, like ‘today I’m going to stay in bed and play with my willy all day’? Atos would possibly argue that the text box below each question enables the more nuanced details to be thrashed out, but how is that text going to be measured, counted or made sense of?

Well here is how; an outline of the way in which the questions are awarded points. So, for example, points for the simple task question;

Cannot learn or understand how to successfully complete a simple task, such as setting an alarm clock, at all. (15 points)

Needs to witness a demonstration, given more than once on the same occasion, of how to carry out a simple task before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a further demonstration of how to complete it. (15 points)

Needs to witness a demonstration of how to carry out a simple task, before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a verbal prompt from another person. (9 points)

Points mean prizes. Luckily, the details of the point scoring are available on various sites/blogs if you have access to the internet. A lot of people don’t. One of the strong criticisms raised in recent debates around the ‘abuse’ of Disability Living Allowance was that people sought advice, or even paid people, to help them fill in the forms. What the government fail to see, or choose to ignore, is that these forms are so overly complicated, and with hidden agendas, that most people would not qualify for the allowance without the help of people who understand the system and process. Not because they are scamming the system.

By page 15, I gave up with the game.  I started to write ‘LB has severe learning disabilities’ in each box. I don’t know how many points that will produce, but I’m willing to take it up with Atos or JCP. It’s a nasty, underhand, thoughtless and ultimately meaningless process designed purely for economic reasons; to reduce costs. The human costs are racking up of course. But hey ho.

*In case you didn’t know, benefit claimants are all scroungers until proved otherwise.

Update: 20 July.

Got DWP letter today. LB’s met the eligibility criteria for Support Group. “Success”.

What do we know? The case of Ashley X

There has been a lot of controversy around the  Ashley X story (see here). About whether or not the various ‘keep small’ procedures (hysterectomy, breast bud removal, high dose oestrogen) performed on the six year old, profoundly disabled, child were ethical. I’ve been thinking a lot about the case after hearing  feminist philosopher, Eva Kittay, talk about it at a symposium I was at this week.

EK (would call her Eva but it seems a bit familiar…) began her talk asking who can criticise the decisions of the parents? Well if anyone can, arguably she can. She has a disabled daughter, Sesha, who is in her forties. There are similarities between the two girls.

To summarise her talk, EK carefully went through the arguments raised by Ashley’s parents in support of their desire for the treatment. Basically, the parents wanted their “pillow angel” (hold the shudders for now, eh?) to remain portable so she could still go on holidays and live at home, avoid the discomforts associated with periods, etc and not be sexually attractive (or fertile) to unscrupulous men who may come her way. Those in favour of this treatment argue that the ability of the parents to care for their daughter trumps their daughter’s rights. The child isn’t cognitively aware, won’t ‘need’ her womb, will be vulnerable to abuse, and so on.

EK drew on her experiences with her daughter. She talked about ‘moving through time’ with Sesha. How Sesha developed over the years. Not in ways that fit any recognisable prescribed developmental patterns, but a maturation in her own way. This reminded me of the meal, Rich, LB and I had in a Chinese restaurant last week. It happened that LB was the only kidlet at home that evening, and the option was stay in (with him) or go out (with him). It was a sort of funny, sort of haunting experience. I tried to deflect the flashes of the future that pinged into my thoughts. Rich, LB and me. Out and about.

Chatting about this meal out (together but ‘with’) led to reflections from a few other parents of disabled children. They too had thought about being out and about with their ‘toddler like’ but adult children.

I used to think of it that way too but in reality, LB was nothing like he was when he was younger. He has moved through time too. He is still demonstrably crazily unusual, but he has grown and matured. When I turned up straight from work, he said “How was work, Mum?” That was a jaw dropping moment, that I thought I’d misheard at first. After that, he chattered to himself, ignored us,  stuffed his crispy duck and pancakes and became increasingly obsessed about the cleanliness of the tables. The journey home involved a shedload of repetitive hygiene discussion.

But it was different to taking a younger LB out.

EK described how Ashley’s treatment removed her ability to grow older and kept her frozen in time. She provocatively asked why, if her parents wanted her kept smaller, did they not cut off her legs? She argued that support should be provided to enable Ashley’s parents to care for her at home, protect her from evil and enable her live across a life course. She argued, convincingly, that ‘we don’t understand the contours of our choices’.

And we don’t of course. Though it is often more convenient to ignore that. Especially in the case of profoundly disabled children/adults when we know so little about their lives. Unfortunately, assumptions pervade. The personhood or even humanness of  children/adults with profound learning/physical impairments is under persistent threat.  Frightening when they pretty much comprise the most vulnerable, marginal group in society.

It was a moving, powerful, distressing presentation. A technical hitch meant that the notes were missing for the last few slides. This led to some fragmentation of the prepared talk. EK ended up returning to the question (asked of the parents, medical professionals and others who support the treatment); ‘Why do they insist they know, when they don’t know?’ I’m not sure how much this question featured in her missing script but, for me, it is a question that goes to the core of this debate.