Published on 12, July, 2020
All her life my daughter has fought the stigma that being Autistic was defined as, first a "learning disabilty" and now a "disability". It has destroyed her life, made her feel inferior and sapped her self confidence. Then to see the BBC describe autism as a "lifelong disability" made me furious. Then to find that the source of this bigotry is the definition on the NAS website makes me incandescent with rage. I too am Autistic. The NAS does not represent me or my daughter. The challenges which Autistic poeple face are not what we are but how we are misunderstood. For the NAS to insist on perpetuating these myths makes you part of the problem. I can only presume your definition of Autism was written and approved by a bunch of, perhaps well-meaning, poeple who suffer from Autism Deficiency Syndrome and who lack the flexibility of thought that Autism gives us and we, in turn, have given the world the technology which I am using to write this.
The NAS is, first and foremost, a multi-million-pound disability business. It runs schools, care homes and other institutions, and gets paid by local and central government for doing so. The company makes its money by providing services for the least-able members of our community who need "care" and, yes, sometimes supervision. I am guessing that many of the care staff are just doing a job as they would in any other care home, working to feed themselves and their family, and that includes the managers, accountants, HR people, salespeople and publicists. The NAS is, in Weber's terms, a bureaucracy. It follows a "welfare " model of "expert providers" who provide institutionalised care under the guise of benevolence, provided they are the cheapest bidder.
There are many autistic people who hold down responsible jobs - university professors, teachers, doctors, social workers ... and who are beginning to "come out" as neurodivergent. The last thing we need is to have the largest autism charity telling the world that we are the neurological equivalent of Tiny Tim, poor little psychological cripples. Autism is a learning difference that applies to a significant part of the normal distribution. We may need some environmental provisions to function effectively, or to have information presented in particular formats.
It is unfortunate that the only current way in which one can access appropriate provisions requires us to assume a mantle of "disability" in order to qualify under the Equality Act and other legislation. It is not like being gay, black or trans, where one can self-identify as a minority and qualify automatically for equal treatment. We still have to go through the medical model of "diagnosis" or the welfare model of "needs assessment" to have our differences validated. We need an organisation that will fight for our right to be neurodivergent, not collude with the oppressor!
Ian said:We need an organisation that will fight for our right to be neurodivergent, not collude with the oppressor!
Who is oppressing us? I certainly don't feel oppressed - sometimes disadvantaged or misunderstood perhaps.
Ian said: We may need some environmental provisions to function effectively, or to have information presented in particular formats.
That is like saying wheelchair users only need some environmental provisions like ramps, hydraulic steps on busses etc.
It still adds up to the same types of changes that any group of other disabled people need, but with autism being a spectrum then the range of things is wide, inconsistent in its need and often variable in when it needs to apply.
Our needs are likely too complex to have any one-size-fits-all solution but without the access label of a disability classification then nothing would be open to us.
My opinion is that the existing solution of a disability classification is better than any of the alternatives so far presented as it allows us to request solutions based on our individual needs and not based on other parts of the spectrum that don't affect us.
Hi Iain. I was using the rhetoric used by other minorities. As a white cis-male I am expected to "check my privilege". One does not need to be "diagnosed" as gay or straight, black or white, in order to qualify for equal treatment. The problem with "disability" is that it is predicated on a medical model ... you have the "normally able" and the "disabled". To get the "disabled" label one has to satisfy some external bureaucracy ... if you need accommodations you need an assessment to prove your entitlement.
If I do a social work assessment I am very aware of my power ... the way I write my report, the boxes I tick, may affect someone's entitlement to services. In the ideal world, all new buildings would be step-free and wheelchair users would not need "special" access. If we had an education system that was able to meet diverse learning styles as of right, kids would not need EHCPs.
In an ideal world, parents would not need to pay people like me to give "expert" evidence to a SENDIST in order to get a judge to instruct their education authority to provide the services their kids need. Public authorities would do the right thing <because> it is the right thing, without the need for pleading or threats.
I looked up "oppression" and one definition was: "prolonged cruel or unjust treatment or exercise of authority." I see that in my work - authorities who try to avoid their legal duties, or save a few pounds by creating waiting lists and lengthy "assessment" processes. We have public services - NHS, social care, education - that are being starved of resources and where the accountants effectively drive the policy.
I give my students a quotation ... ironic, isn't it? When I worked for a local authority, it was all about money and "gatekeeping" scarce resources rather than what clients actually needed.
I have a shower room where the only mirror is just above and to the right of the toilet cistern. Unfortunately I’m 6ft 3in so thIs means the mirror is about waist high (maybe the previous resident used a wheelchair?) Fortunately I have my own mirror and can hang it from the handle of the upper window but this means the upper window is unlocked.
VLD said:The standard height of a hook is not always correct!
Care to elaborate?
A coat hook at 2m is ideal for a long coat (trench coat style) but will not be suitable for a wheelchair user to access. Do we design if for access or function?
Should it be strong enough and stick out enough to support half a dozen heavy jackets or be more slimeline and safety concious (since it is more or less at head height)?
Can we ever say there is a "correct" height? I think "standard" is probably a compromise of function and accessability rather than trying to do any one job outstandingly.
Maybe that is the problem of overanalysing this issue - there can never be a true solution, only one appropriate for a specific situation that is unlikely to translate well to other dissimilar situations.
The problem is lack of thought and imagination. The height of a coat hook is an excellent example. Perhaps they should employ more autistic poeple using our abilities to inventivly think through problems and not rely on fixed lines of thought. The standard height of a hook is not always correct!