Taking a break…

Hi everyone,

Just to say that this blog is taking a little break (March, 2017). I need to focus on my PhD for probably the next couple of months, and can’t think about & work on autism stuff as much at the moment. I’m sure autism will still be here when I’m back (unless we get cured in the meantime – in which case, I might start a blog about being normal.)

Back soon,

 

q.a.

A survey of Teacher Prejudice?

Interesting blog here about the reporting earlier this week of the GL-Assessment Report (there’s a link to the report and information about it in the blog, so I’m not going to repeat it here.)
But this story and the discussion around it really resonated with me. Having been ‘the SEN kid’ (relating to my physical disabilities), and having had my parents and one dedicated teacher fighting for my rights, I know what it’s like to be in the middle of a conflict where those on the other side (other teachers, Local Authority employees) are arguing that your rights should be denied and you should be left to struggle because others are more deserving.
It’s disgusting. It messes you up – and I wish the teachers who contributed to the assessment report blaming parents for seeking diagnosis and support for their children turned their anger on an education system, and a government that is failing to meet the needs of the children caught in the middle of it. Once again, “Divide and Rule”.

starlightmckenzie

CABLE CAR RESCUE PRACTICE

This morning I woke up to news that GL Assessment had published a report that stated a large majority of the 810 teachers surveyed, (57 per cent) thought there was a misdiagnosis of SEN, and over three-fifths of teachers (62 per cent) thought those children with genuine need were missing out because resources were being diverted to those who didn’t really need help.

‘As our survey of teachers makes clear, there is a widespread feeling in schools that there is a misdiagnosis of SEN and that parental anxiety, however understandable, doesn’t always help with an objective evaluation. It is not that teachers think that SEN is an inflated problem, rather that some children who deserve support are not receiving it because it has been diverted to others who do not need it. At a time when school budgets are under pressure, this misapplication of resource should not be allowed to stand.’

It is…

View original post 687 more words

Grammar Schools and Special Educational Needs/Disability: An Insider Perspective

Background Information & Context 

If you are based in the UK and have even a passing interest in news, politics and current affairs, you have probably come across a lot of fairly recent discussion about the possibility of a return to the grammar school system as formal education policy.


In case you’re reading this outside of the UK, or are otherwise not totally familiar with the term “grammar schools” – such schools can be defined as “(In the UK) a state secondary school where pupils are admitted on the basis of ability. Since 1965 most have been absorbed into the comprehensive school system.”

Such schools existed within a segregated education system where a child’s options in terms of secondary education were often significantly shaped by the results of an exam at the age of 11.


The system has been widely criticised as divisive on the basis that it privileges some children and limits the opportunities of others, based on performance in a particular exam. It was therefore largely abandoned across the UK (with some exceptions – such as the area where I grew up). However, the current Conservative government has plans to return to a system of state-run selective schools, which have already attracted a lot of criticism, including within the Conservative party itself (see The Financial Times here, The Huffington Post here – and a defence of the plans reported by The BBC here.).

So what do I have to add to this ongoing debate?

Grammar schools and Special Educational Needs & Disability 

Well, one issue that appears to be totally lacking in government policy and discourse around the reintroduction of grammar schools is any reference to Special Educational Needs and Disability (SEN/D) – both in terms of how a selective education system may unfairly discriminate against SEN/D pupils, and of what grammar schools themselves may actually need to do to meet the needs of SEN/D pupils who meet their entry requirements and become their pupils.

This omission led me to seek out any research or reference to the experiences of people with SEN/D who have been educated in grammar schools, and I couldn’t find any.

So I’ve decided to ‘set the ball rolling’ here, by sharing my own experiences as a pupil with SEN/D who attended a grammar school for my entire secondary education (including Sixth Form). Obviously this is one experience – it is anecdotal and the story it tells is impacted by many factors other than SEN/D, as any personal narrative is. I don’t intend it to be representative of anything other than my personal experience – but I’m writing it in the hope that it will make others think, and perhaps encourage those who are in a position to do so to make the topic a focus of some actual research. It seems like such research might make a contribution to the body of literature that already exists on inclusive education (which mostly, in relation to SEN/D, seems to present this term in opposition to the existence of “Special Schools”) – and that given the apparent direction of travel in education policy, a project focusing on these experiences could be topical and timely.

Grammar school & SEN/D – My Experience 

As I indicated above, the area where I grew up was relatively unusual in that it clung to its grammar schools (and continues to do so now.) This meant that, particularly where we lived, options were extremely limited for children who didn’t pass the entrance exam for one of the grammar schools or who didn’t meet the faith requirements for one of the (Christian) faith schools in the town. So I sat the entrance exam.

And I passed.

It was only once I was there that I began to find out about disability – about my disability. (I should add for clarity, that although on this blog I focus primarily on autism, my personal experience of disability in school was all concerned with physical impairment, as I didn’t receive my autism diagnosis until I was at university as an undergraduate.)

I began to find out – to have the very first, early inklings of disability (though, of course it wasn’t called that) in my first grammar school P.E. lesson. There’s a long conversation to be had about school P.E. (Physical Education) curricula and how they inscribe powerful normative expectations about what bodies should and shouldn’t be capable of, but I’m not going to dwell on that here. It just happens that this was one of the first times that someone (a teacher) observed that I couldn’t move my arms the way everyone else could. There had been other medical situations – doctors thinking my arms were fractured on the basis of x-rays following injury, then deciding they weren’t, physio from birth for congenital muscle contractures etc – but nothing that really made me feel that I was different from others and that there were things I couldn’t do because of this difference – as a child I always thought the “things I couldn’t do” were because I was lazy and wasn’t trying hard enough. I probably expected that if I had something actually wrong with me, then someone would have told me.

Anyway – P.E. – I couldn’t throw a netball – which, of  course, isn’t really a problem except in a situation where everyone else can and where that is what is expected, and demanded by those in authority, at a particular time.

And this – along with lots of other issues and complications that have arisen as I grew and as my conditions progressed, led to a lot of medical attention and to me receiving various diagnoses (the latest of which is about a year old now, and is a result of my body finding new ways to misbehave) and to (rare, complicated) names for  the reasons behind the “things I can’t do” – and the related pain, fatigue and personal issues that arise from an unruly body that doesn’t behave like other bodies and won’t do what it’s told.

Anyway – this hopefully gives a sense of background. I was a grammar school pupil, who became medically diagnosed as being disabled (or – “as having a disability” – I was told I shouldn’t call myself disabled as that made it sound serious and bad.)

There are two implications of the grammar school experience for a student with SEN/D that I’d like to explore. The first is concerned with the idea of being “selected”, and what it can mean for an SEN/D pupil, and the second (that I’ll explore in a subsequent post) is about my experience of actually accessing the SEN/D system as a grammar school pupil.

The meaning & institutional rhetoric of being “selected” 

One of the things that happens as a result of selection – and of being selected – is that it comes with the conferring of status as a “chosen one”. Certainly my experience of this fell into two categories – a) You are lucky to be here, there were around 5 applicants for every place and you have one of them. You must work hard to meet our expectations otherwise you will have wasted this opportunity, that could have been given to someone else, and b) You passed the exam, you are obviously more intelligent than average students, so if you fail to achieve higher than national expectations it will be because you have not worked hard enough (this was actually said in an assembly the day before my year group took its Year 9 SATs tests – by a teacher who was also an exam board marker.)

The implications of this in terms of coercing conformity and individualising failure FOR ANY PUPIL are, I hope, fairly clear. In the context of my emerging disability, they meant that even with a medical name for my condition (albeit one that no one has ever heard of) and a letter from one of the top specialists in the country, I still believed that the fact that I couldn’t keep up with work, and that I was spending hour and hours – all evenings and weekends – on homework (or asleep, I get so incredibly tired) was clearly my fault.

I worked hard (while people were telling me I was working too hard, but not offering any solutions in terms of how else I might keep up), was in constant pain, and probably contributed to the already accelerated wear and tear of my non standard joints. Consequently, I have no idea how much work is “enough” or how much pain is “too much” – this means that although there are accommodations or adjustments available, (even when these have to be fought for, they exist, in theory or in policy at least) –  I can’t accept them because I equate needing them with cheating and being lazy. I’m absolutely sure I could do it if I just tried harder (and accepting where I can’t is quite soul-destroying anyway, without external pressure and stigma).

This needs some further explanation though, because it might possibly be inferred from what I’m explaining here, that I’m suggesting having high expectations of people with disabilities, or encouraging a strong work ethic is wrong. I’m not. But I’d explain the nuance of what I’m describing here by comparing the school rhetoric I’ve described above with what I got from my parents and my upbringing. I was certainly brought up to believe (and was told) that I could probably achieve most things I put my mind to, and was encouraged to try new things and to take opportunities. I was also brought up to feel that education is important (although my family wouldn’t be described as “academic”) and that hard work and commitment are morally good things. The difference though between this upbringing and the school rhetoric is that my upbringing came with a safety net. While being encouraged to aim high, I was never in any doubt that my worth as a person would still be valued, and that I’d still be loved and supported, if I didn’t quite achieve. The encouragement came in a context of unconditional love.

Grammar school rhetoric though can never come in that context of unconditional love.

Certainly my experience was that the school was very aware (and fearful) of its need to prove itself. It took the “top 10%” of children from the area, so it had to be at the top in terms of results, and this meant that it transferred the pressure to its pupils. The problem here though, of course, is that this logic is based on a kind of conveyor belt system that equates effort in with results out. For me though, there was no way to quantify the “effort” of managing chronic pain and fatigue in terms of results (work done, exam results achieved etc.) I think Spoon Theory is a good way of articulating what I’m getting at here – but I’m pretty sure that the problems of this equation (effort in = results out) in relation to grammar schools, and the governmental and social expectations of such schools, means that pupils like me are always going to be problems for them, and consequently that there’s a strong likelihood that, at some times and on some levels, we are going to be made to feel like problems ourselves.

As I’ve suggested before in relation to Mental Health Policy, those who support Theresa May and the current government, and who advocate a widespread return to grammar schools possibly need to be honest in accepting that they are happy for SEN/D pupils (including those, like me, who are “lucky” enough to be the “chosen ones”) to be collateral damage. At least then we’d know what we were fighting against.

The British Psychological Society, LGBT Rights, “Cure” … and Autism

I saw this on Twitter yesterday.

It’s an article by the British Psychological Society (the BPS) about how “UK organisations unite against conversion therapy”. The article basically affirms that attempts to cure people of stigmatised sexual orientation or gender identity have no place in civilised society. (Obviously.)

In it, Janet Weisz, Chair of the Memorandum of Understanding group, and Chief Executive of the UK Council for Psychotherapy, states that-

“Any therapy that claims to change [a person’s sexual orientation or gender identity] is not only unethical but it’s also potentially harmful.”

So far, so good.

“Therapy” that seeks to “cure” a person by stamping out “problem” behaviour is wrong, harmful and oppressive.


Now let’s think about this in relation to autism.

The cognitive leap required is not so far. People who know their history in this regard will know the relationship between the work of Ivar Lovaas with “effeminate boys” and the Applied Behaviour Analysis (ABA) practised (still – widely, and at great financial cost) on autistic children today.

ABA is a contested and controversial topic in the autistic/autism communities. Practitioners advocate and advertise it (well, they would, wouldn’t they?), parents report “success” as their child makes eye contact or asks for a drink. Success as children perform “normal.”

But let’s look at the other side of the debate-

  • Ex ABA practitioners on why they left ABA “When I started finding more blogs and articles from Autistic people describing the trauma they felt as a result of ABA, I was so horrified, I could barely finish reading them.”
  • Autistic adults summing up why ABA is abusive (including this extremely well argued and balanced post by Unstrange Mind that speaks to concerns of parents and autistic adults alike).
  • The parents of autistic people subjected to ABA writing warning letters to other parents describing the PTSD experienced by their children as a result (here)

The debate has been well rehearsed elsewhere and I don’t intend to repeat it at length here – other than to say that forced compliance (whether forced through coercive use of aversives or through “positive reinforcement”) is wrong. Training a person to behave like a performing monkey on demand, whether in the hope of changing their “inner psychology”, or to make them more socially acceptable is wrong. It teaches unquestioning obedience to powerful adults, it denies agency and it destroys trust – whether by means of carrot or of stick, it is wrong.


Now, let’s return to the BPS.

Let’s return to the assertion that attempting to change a person by means of “conversion therapy”  “is not only unethical but it’s also potentially harmful.”

Surely, the logical progression of this (absolutely correct) argument is the condemnation of Applied Behaviour Analysis (ABA) “therapies”, which have attracted condemnation from autistic people, from the parents of autistic people – and even from ex ABA practitioners.

Well, not quite.

In its Guidance for Psychologists on “Autistic Spectrum Disorders”, rather than addressing the “unethical [and] also potentially harmful” nature of ABA, the BPS not only uncritically references its use as one of a range of “interventions” to which an autistic child may be subjected, but it also advocates the “distinctive contribution of psychologists” to such endeavours (at p.4)

So there we go. Forms of “therapy” that are “unethical” and “harmful” for one oppressed group are “interventions” to which psychologists can make a “distinctive contribution” in respect of another.

This is outrageous and harmful, and if the BPS were to (consistently) engage more meaningfully and more effectively with the autistic communities about which they are so fond of producing “Guidelines”, they may learn a little about working in ways that are less “unethical” and “harmful” to those communities.

I dream of such a world.

Theresa May, Mental Health and Resilience…

This week has seen Theresa May shouting her mouth off about “Mental Health” – Apparently, the problem is stigma, and we all need to talk about our mental health and all will be well with the world (That’s a trap by the way)

I could write for a long time about how utterly offensive I find it for the leader of this government, and this particular party to dare to isolate “mental health” as an individual, personal problem that many of us just happen to have, that occurs in isolation from the socio-political context for which they are directly responsible. I won’t do that – not too much anyway. I’m actually getting quite bored of reviews, and IAPT, and “parity of esteem” and however many shades of “doing nothing while making it look like we’re doing something so that we can shut up those who criticise us and make the rest of society look the other way” they can come up with. Enough already. I’d like my focus here to be a little different.

I’ve read a couple of good things this week too though, which have made me think.

One of those things is this – “The Problem with Resilience” (Written by Linda Gask)

I liked this piece, it made me think. So here, I want to add to the points it raises by sharing my own thoughts and perspective (as a physically disabled autistic woman with “psychiatric co-morbidity”). So then –

Resilience

I’m glad people are challenging the use of the word “resilience” (as in the article above), because to be honest, this word (and its synonyms) feel like a stick that has been used to beat me with for most of my life. The labels that have followed me around – “over-sensitive”, “anxious”, “depressed”, “ill”, “emotionally labile”, “autistic” “psychiatric co-morbidity” (for goodness’ sake), – or, as I’d often describe myself, “off my fucking head”, are all often taken to mean someone who is not “resilient”. Someone who, according to the standards of the world, spends periods of time “not coping”. The consequences of this are advice along the lines of “look on the bright side”, “put it out of your mind”, “toughen up”, “think of others worse off than you”, or … the worst, the dreaded recommendation of “mindfulness” and “therapy”.

And according to any objective standards of the world, that’s all quite accurate. Objectively, I’m physically fine most of the time. I’m not in a war zone, I’m not starving, I’m not experiencing domestic violence, I have a fairly regular income, a great family and am in a particularly loving relationship. Objectively I’m safe. Objectively things are good. Objectively I should be able to cope, and my frequent failures to do so must indicate lack of resilience (and a lot of other bad things and moral failings too). But this objectivity is not the sum total of my truth.

My reality is often a racing mind of tumbling confusion that goes so fast I can’t hold onto it. That just won’t keep still. It’s spiralling screaming of internal monologue telling me everything that’s dreadful and wrong and horrid. It’s (really, actually, truly, and quite distressingly) not being able to go near the oven in case I accidentally cook the cat. It’s really believing I might have cooked the cat. It’s repeatedly checking I haven’t cooked the cat. It’s getting other people to check I haven’t cooked the cat…  It’s not daring to move because I might hurt someone. It’s being doubled up on my bed unable to move because anxiety can be literally crippling. It’s trying to hold a coherent conversation while blocking out the disgusting, violent images that accompany my intrusive thoughts (in my case I mostly know these aren’t real – I know some people don’t, but they seem real, and they’re distressing, and trying to ignore them and concentrate takes work). It’s wanting to be alone because people hurt, but being terrified of being alone because I don’t trust my own thoughts. It’s knowing that my loved ones are about to die horribly. It’s screaming and hitting myself because there are just no words anymore. I can’t escape my own mind, even when it’s the enemy.

My reality is walking down a street, or sitting talking to someone while my body is telling me (my reality) that I’m about to be hit by a train. It’s permanent fight or flight. It’s stomach churning sickness. It’s being expected to “just email someone” or “just phone someone” when actually that “just” involves putting my head in the jaws of a lion. It’s being totally terrified and out of control because a train is delayed, and then being exposed and vulnerable because “being totally terrified” makes me do odd things like moan, rock and hit myself. It’s being asked if I’m “alright”, and just not having the words because the person asking is just nowhere near my reality, and probably doesn’t want to be.

It’s feeling a bit better. Feeling like the sun’s come out. But knowing it won’t last. It never has lasted.

I don’t deny that these are problems. They are. It’s not fun. They’re part of who I am – for whatever reason – clinical genetics, neurological abnormalities, “environmental factors “ – whatever. They’re part of who I am. But I have to say – managing them makes me feel pretty damn resilient. I’m still here, and I achieve (sometimes not everything I’m supposed to achieve by objective standards – sometimes not everything I want to achieve) But I manage.

The thing that angers me though, is the political context of my personal experiences (back to Theresa May. Well, not totally.) Before the things I’ve described above acquired their clinical labels, and gave me the words for my “psycho-social disabilities”, my diagnoses related to physical disabilities. This meant that the advocacy and campaigning that was fought on my behalf was for equipment and adjustments for me to be able to access my physical (educational) environment on the same basis as my peers. My disability politics were framed around the Social Model (with various adjustments as I’ve gone along) – but the idea that the environment was disabling, and that adjustments to enable participation were my right felt like it was established, even if it was ignored by many, and made me doubt for myself whether I was truly deserving of such adjustments and accommodations.

The trouble is though, that I just don’t experience much of that for my “psychiatric co-morbidity”/psycho-social disability (elements of which I’ve described above). For these, I’m offered medication (can be useful, but still carries the expectation that I’ll fix myself and become socially acceptable – and stop causing others problems by talking about my weirdness), or therapy (which translates as “fix yourself” – or “allow a professional to fix you”, and results in self-blame when it fails to work).

I’ve been trying all that stuff for years though, and I’m still not “fixed”.

And I wonder how long a wheelchair user would be expected to persevere with physiotherapy and rehabilitation before they were allowed a ramp to enter their workplace?

The problem is, that as I think about it, the equivalent of a ramp – the situation  that would feel like true equality (or “parity of esteem”), that would honour my resilience and respect the “work” that becoming and staying well can sometimes take, and that would represent a true challenge of ableist oppression and the pursuit of a truly just world, would involve acknowledgement of the fact that for some of us, at some times (often and repeatedly and as a core, ongoing part of our lives), “resilience” might look like getting out of bed and having a shower. It might look like making a cheese sandwich, or summoning every ounce of strength and courage that you have and walking 100 meters to the post box. It might involve getting from one end of the day to the next, and managing to find the ability to sleep in the midst of the screaming and hopeless crying. It might involve still being alive.

I hate wanting to feel good for having “managed through a bad day” and wanting to celebrate what, to me, feel like huge victories (I cooked dinner, I made the phone call, I looked at the mail, I checked my bank account, I ate in front of strangers), but rather than feeling good, beating myself up because of all the “proper” things I haven’t done because I was busy directing all my efforts at coping with what was in my head.

Shall we think though about what this “true equality” might mean for our society? This society tells us that we’re the problem, because to suggest otherwise would involve contemplating social change and a fundamental challenge to “how things are” (according to neoliberal, capitalist orthodoxies). So unless Theresa May is taking on such a challenge and working to address it (I don’t think she is), then she accepts that people like me (and people who experience this injustice far more extremely than I do) are collateral damage. She accepts that society makes us into personal failures and lets us live on a knife-edge.

Okay – but can we please stop dressing it up as concern for “mental health” or as “challenging stigma”? It’s not. It’s protecting the status quo and keeping things comfortable for those who aren’t falling apart, while causing more and more of us to fall apart, and then blaming us when we do – Conservative Capitalism’s Cannon Fodder.

It’s brutal, oppressive and unjust. Let’s not pretend otherwise.

#autisticsinacademia – A Hashtag is Born!

Just over a week ago (on 26th December 2016), I started a hashtag – #autisticsinacademia

It was just an idle tweet in reply to something that someone said to me, but it has become something that is working to put autistic people involved in academia in touch with each other, to enable us to share our successes and frustrations, and to help us to be visible in, and contribute to the wider world of academia on Twitter.

It’s a fun thing, and it’s good to feel connected.

I’ve made a Storify (that you should see here) – Firstly to collect together some of the tweets that have appeared so far on the hashtag, and secondly to show what we can achieve through Twitter in terms of connection, networking and activism.

Enjoy the Storify, check out the hashtag – and join in the conversation!

#autisticsinacademia

Disability Politics & Internalised Ableism: Reaching for the Stars with Boots made of Lead.

I’ve been thinking a lot recently about my first experiences of “becoming disabled” (those words are in quotation marks to reflect the fact that although the genetic, physical, psycho-social causes of my impairments have been with me since before I was born, the social “becoming” part was triggered and shaped at various points, predominantly in my teens, and is strongly related to moments of diagnosis. and interaction with medical/educational/psychological/psychiatric and disability-specific employment services.)

I’ve been thinking about this, and how it has been connected with my positioning myself as “disabled” politically, and in terms of advocacy/activism – and some of the things I’ve done as a result of this (NGO research jobs, advocacy/volunteering, event organizing, training and awareness-raising, “support” groups, protests, petitions, angry letters, social media activism).

I don’t really know why I headed in this direction when other disabled people don’t identify in this way, and don’t take this route (I’m not criticizing others who think/act differently in relation to their identities – they’re as entitled to shape and define themselves as I am – I hate it when people criticize how I position myself, and there are other areas of my life that I choose not to politicize because they’re too painful, or because they’re not only my story to tell, so I’m not about to start criticizing others.) I suppose for me though, my way of seeing/doing/being is influenced by the ways in which others fought for me as a child/teenager, as well as having a strong and interesting political and Christian family background (although reconciling my disability politics with my other politics isn’t always easy – others have written on intersectionality and leftwing activism, and they make some good points about ableism in these physical spaces and discourses.)

One of the things I’ve been thinking about though, is how easy it is for us to be influenced (and limited) by the very things (arguments, systems, policies) we’re fighting against.

I’ve spent a large proportion of my life being concerned with disability rights, mostly as the only disabled-identifying person surrounded by allies who care about rights but are not themselves disabled. The thing is though, that in my experience, when we actually have that disabled identity, we generally also have battle scars and war stories about how we’ve had to fight for our own rights (or had others do that for/with us). And in those situations, we tend to hear and be exposed to a lot of arguments about why (seemingly very well-meaning) people just can’t “meet our needs” or “enforce our rights” – Why it might not be fair, but what can we expect? That’s just how it is.

A few of the things I’ve experienced/heard/internalised in relation to myself are:

  • “She can’t do that course, she wouldn’t be up to it”
  • “She can’t have the equipment she needs – You’re just asking because it’s trendy”
  • “Need evidence … need to prove your case”
  • “She can’t have support, there’s no budget”
  • “She’ll pass anyway, can’t expect support just to get higher grades”
  • “Too old for support, but we can possibly bend the rules if we’re lucky”
  • “Not sure if we can accommodate you here”
  • “You have to meet us halfway – be realistic”
  • “It’s like that for everyone. You’ll be fine if you keep trying”
  • “She’ll grow out of it”
  • “You won’t get this amount of help in sixth form/university/ the “real world”
  • “You had adjustments when you took your exams. Your qualifications don’t count the same.”
  • “Disability law is different from other discrimination law because disabled people need reasonable adjustments.”
  • “It’s a shame you can’t access the event where you’ve been invited to give a talk about your work in disability, but unfortunately this is the room that has been booked.” (a local authority)
  • “If the conference is too much for you, don’t come.” (a line manager)
  • “We want you on this committee but can’t change the meeting format to meet your individual needs” (a disability organization).
  • “…medical report to set out what we have to do to meet our basic legal obligations” (a disability charity employer)
  • “That’s because you have autism”
  • “I can’t do a PhD. Autistic people can’t do PhDs”
  • “I can’t have relationships, I’ll never get married. Autistic people can’t/don’t do that.”
  • “Yes, community support might keep people out of hospital, but if they go into hospital they’re funded by the NHS, which saves our local authority funding” (a local authority service manager)
  • “People with chronic anxiety don’t belong in teaching jobs”
  • “Students’ needs come first”
  • “You need to provide medical evidence of your fitness to teach”
  • “Can’t expect everyone to care about something so niche. What’s the universal appeal?” (a university)
  • “You won’t be taken seriously if you act like a single-issue lobbyist.”
  • “Policy is more than just activism”

(N.B. I know these are little things, they’re the ones I feel comfortable disclosing here. I have limits. But also, I’m not trying to play Oppression Olympics or Tyranny Top Trumps – these little experiences drive me to care about the big experiences. It’s not a competition.)

And I think this is something tough to fight against if our hopes and dreams for disability politics are centred on a vision of liberation and equality that takes into account (and, dare I say it, celebrates) our differences – while not using them as an excuse for our oppression. If we’re not careful, we end up actually believing that we’re “lesser” – that people are well-meaning, but society is just organized as it is, and we can’t possibly expect it to change just for us. We can end up arguing from a really weak, instrumentalised position for “better services” and “therapy” – and limiting what we “ask for” because deep down we know that we’re not proper people and we’re just not worth it. Too difficult. Too expensive.

Internalised ableism is something we need to be aware of if we’re acting politically as disabled people. In my opinion, it should NEVER stop us from campaigning, protesting, organizing and telling our stories in whatever ways are available and safe for us (we don’t need to wait to be “fixed” and liberated from our internalized oppression before we try to fight it) but we need to be aware of it, and see it for what it is. When things are done to us, and said to us, and done and said about us, this has an effect. It becomes part of us – it’s bound to. But if we want to work politically I think we can be aware of it without caving in – in the same way that we’re aware of, and respond to physical pain as a symptom – and maybe work WITH it for change.

There will be compromises. We won’t always get what we want. And we won’t be universally agreed with (if everyone agreed, there’d probably be no need for the social change we believe in). But if we begin by framing our activism from a position of compromise we’ve lost before we begin (I’m looking at national disability charities here.)

If we aim for the stars, we might just make it to the moon.

  •  I still feel I’m not a proper person (certainly not a proper woman).
  • I still feel like I’m just an individual failure who shouldn’t expect the world to change just for her.
  • I still feel like I don’t belong, and that I shouldn’t expect to.
  • I still feel like a fraud.
  • I still think/feel/know deep down that there are things I’ll never be able to do.
  • I still worry in case my politics are part of a delusional pathology – or an excuse for my own personal failings.
  • I still worry about costing money if I need adjustments, or when I need to access medical services because of my disabilities.
  • I know that I challenge institutional and societal expectations, and sometimes put others in difficult positions because of this.
  • I still feel like a problem.

Those feelings, that I guess many of us share, don’t go away. No amount of personal therapy is going to fix an unjust world.

But they should never be allowed to dictate and control our activism and our advocacy.

I can’t pretend to have all the answers. I don’t know what we’re heading for.

I just can’t imagine not feeling on some level “less than” – but I don’t think I have to. I don’t think I have to have the “bigger picture” – in fact, I think the expectation of having all the answers is another thing that’s used to keep us quiet (I don’t think those who control the systems against which we struggle have all the answers – they just have power, by which here I mean less of a requirement to account for, and explain themselves.)

It’s one battle at a time, one day at a time. Not having all the answers isn’t going to make me stay quiet.

“If you don’t ask, you don’t get” and, not that I think I should have to “ask” to be equal, I’m going to keep on keeping on even if I don’t really, fully believe that I deserve it – because it’s precisely that feeling of not deserving that I want to stop others like me feeling in the future.

Funny really – it’s totally about me, and it’s not about me at all!