Keeping up appearances

In what ways are trans people like disabled people?

The woman appears to hold herself rigid, and says that if she let go of control she would show tics. I have not heard of her condition before. She says that people wonder if she has Parkinson’s, and when someone encourages her to just let her body do that, she says it is painful. I don’t know if the movements themselves are physically painful, or if they are emotionally painful.

For those who can do it, holding in a tic seems to cost effort and energy, and give a sense of fear that the tic will prove uncontrolable, though that can be managed: someone might, wanting to seem dignified, control the tic but be prepared for it to come out. And, alternatively, stimming can relieve pent-up stress, but someone might want to avoid stimming, again so as not to appear different. Stimming is not a tic. It is experienced as something one might choose to do, or feel free to do in some places, less free to do in others, which relieves tension.

Dignified. Or, apparently normal. People whose limbs are twitching are seen as weird, and I do not want to seem weird.

-Please feel able to be like that here. People are welcome here exactly as they are.

And still she does not want to, and perhaps the pain is physical.

It’s a social rule, and here we can change the social rule. Elsewhere, fitting in, appearing normal, is highly prized. Well, moving through a shop or high street you don’t really want strangers paying too much attention to you, and being in a social group is different. We are here to be together, so being yourself is more highly prized.

I suppose if you were still uncomfortable with your disability, still in mourning that it had come on, still regretting the loss of complete ease in appearing normal and desperate to Keep Up Appearances because you feel others will judge you for it because you judge yourself and are not aware you are judging yourself because it’s too much to admit but are projecting-

then you might invest a lot in suppressing the tic, even in the most accepting social group. I do not see they accept me because I do not accept myself. I am still trying to pretend to be normal.

I wanted her to have the right to Appear Normal, to suppress her tic, if she wanted. It’s all very well to say Be Yourself. You are Welcome as you are here. Well, I am not disabled so that is not a difficulty for me, but it might be-

if she feared having let her control go, she could not resume it in less accepting spaces, for physical or emotional reasons

if letting go the effort might be that relief that releases all the pent-up misery of the loss, of having this new burden.

And it’s still all about how you appear. If it were completely OK to show a tic, there would be no problem. There is only a problem because there are places you can show your tic, and places you can’t.

Can’t? Well, you won’t die. There is inhibition within you, and social sanction from without, though part of the inhibition is imagining the social sanction is greater than it would be.

I mention all this because I wanted to protest what I felt was subtle social pressure to show her tic. We can be fully ourselves here, and you have to prove that to everyone by showing your tic. The non-disabled people have the option, whether to share or not, and might share something they feel a little uncomfortable about, stretching a little way outside the comfort zone, but you have to share your tic, however uncomfortable about it you are. My response was, well I am trans, and I am not going to take off my wig.

Because at least for me, the way I present is about appearing normal. I don’t dress androgynously. I don’t present male any more, so I present clearly female, which involves wearing a wig, however accepting the social spaces I enter are. And why would I want to show off my bald heid onywye? But if I could show off my bald head, then I could show off my character, without need to fit the box marked Trans Woman, and dress in a way to express my self, rather than my femininity.

RISDM 58-162

Disability and inclusion

No-one will escape disability, except some of those who die instantly in accidents, which is not necessarily preferable. We will be unsteady on our feet, or unable to stand, having difficulty remembering. We will stretch out our hands, and someone else will fasten a belt around us and take us where we do not wish to go. Those who are disabled now frighten those of us who are fit and well. We see our future, and turn away.

Fiona MacMillan, a trustee of Inclusive Church, at 20 was non-disabled, getting everywhere by bicycle. Ten years later she was in a wheelchair with Tourette’s. She explained this to us: she might tic during her speech; and having explained it, it became alright. As she was speaking, she made a number of high-pitched squeals in mid-sentence. She carried on speaking, and eventually her squeals ceased. At another point she was waving her right forearm, her elbow on the arm of her chair. I suppose the Inclusiveness advance we could make would be for tics to be alright, and for her not to have to explain them. My first understanding of Tourette’s came from LA Law in the 1980s. And if she had had to attempt to appear normal in order not to be judged, her tics would be unbearable and she would have been unable to speak to us.

She told us to do whatever made us feel comfortable, and suggested pacing the floor at the back if necessary. At one point later in the Diversity and Inclusion Gathering, I wanted to, but forebore. I am no longer a member of my AM, and in part that is because I could not sit still in Meeting. However when she got someone to hand round envelopes to the audience, and continued speaking, she would not ignore that we were talking amongst ourselves rather than listening. First she repeated the first line of her next segment several times, then upbraided us for being unable to do a simple thing like pass round envelopes without chatting like silly children.

A new example of “Quakerly behaviour”, which as Mark Russ says must stop being used as a synonym for “good”. I took notes on her talk (which here is filtered through my understanding and emphases).

Disabled people have a lot to teach other communities. Disability is not a matter primarily of biological difference but power. Our stories help us make sense of our lives. Identity comes from experience and insight. The stories we tell define who we are, but who tells them affects them.

Nothing about us without us.

She is not comfortable being defined by one word “Disability”. We did an exercise stating different parts of our identities: many identities makes a minority of one (I am aphantasic Scottish trans Mensa-qualified Christian, and that may be enough). Lots of things make up our identities.

Her illness is not tidy. Its effects on her physical and ccognitive capacity change all the time. Medical science about it is guesswork. To call her a person with a disability is a lazy, simplistic shorthand. She is neurodiverse, and a wheelchair-user. The labels are useful if adopted for ourselves. Society does not know how to be inclusive. She has to deal with the reactions of others, embarrassment, fear, etc, and their effect on her. (My bereaved friend found herself reassuring or even counselling people who came to condole with her.) When she gets a new personal assistant, she has the person go around in her chair to find what it feels like. She is living on the edge, and it is difficult. She reflects and remembers others’ experience and viewpoint, but is more comfortable with broken, vulnerable people. Her attention slides off the surfaces of complete people (like Jesus, come not for the healthy but the sick). She learns to be amazed. She has to remind people that her illness is not a moral fault or in her control. Accepting and knowing herself, she can accept and know others, and share what she knows of human difference.

How hard it is to be vulnerable! Austerity has cut benefits, and the aggressive measures to cut benefit fraud which is less than 1% of benefit payments hurts people, as well as demonises us as scroungers.

She struggles with loss, rejection and blame. We should be honoured as guests or members of the community. We are not all the same, and our stories are worth hearing. Painful things happen to her hourly, but they are less painful in a community trying to know better so it can do better.

The church cared for people on the edge, which was counter-cultural, but this can be mere charity, looking after needy rather than valuing their gifts. Disabled people want greater autonomy, to be agents of change. 11m disabled people were born healthy, and are adjusting. 43% of adults over pension age are disabled.

There are different models of disability. The medical model analyses the function of a body, and the body is fixed to fit norms. Disability is an individual problem. The social model says people’s difficulties are caused by the way society is organised. Now, public buildings should be designed so that the experience of everyone entering and moving through the building is the same, whether they walk or go on wheels, an architect tells me. There are also Christian models of disabled people as passive recipients of charity or even being punished for sin.

The church can marginalise and isolate people, and focuses on adaptations not people- getting in, but not joining in. So we should ask how disabled people can be part of the prophetic message of the church, becoming witnesses not as “bravely” or “cheerfully” coping with difficulties.

We are all a combination of needs and gifts. When our needs are met our gifts can flourish. The inclusive church must anticipate the needs of the people who are not here yet.

We bring our experience of darkness, weakness and restoration, of our bodies, the source of wonder, pleasure and pain, of waiting, anger and forsakenness. We come not as victims but as liberators.

Drive

I realised that the most important thing for me is suppressing my emotional reaction, at least my conscious feeling, rather than dealing with the issues making me frightened, frustrated and angry. Irresistably I am drawn to thinking of the low-status chimpanzee, who cannot show he is angry as it would attract the alpha-male’s attention. The feeling will continue until the situation causing it changes, and that could take weeks- when it could be much worse.

Counselling session. I am frightened of telling Tina this, the most sympathetic listener I can imagine, and I don’t want to say it. I want to make a joke and avoid saying it. Rather than acting, I reach for facebook and my blog stats pages, hoping to get a kick, though the returns are variable. I can feel unconsciously, but instinctively I see conscious feeling as the most important problem. Rationally I know there are things I must do, and I put them off. Holding feelings out of consciousness takes energy leaving me feeling lassitude.

There is the addictive rush of responses on facebook and the blog stats page, but the returns are variable. I reach for the computer in the morning hoping to get a hit big enough to get me out of bed, and often it is not there. At best it is borrowing a boost that has to be paid back later. But, suppressing genuine feeling, I can spend hours with half an eye on the TV and half on the computer, not writing or doing anything, and feeling rotten about my worthless inactivity.

On a facebook group, a man said he was leaving, because I had driven him out, and that I was “manipulative”- a high compliment, I have wanted to be able to manipulate people all my life. He calculated he would get enough “Oh Alex, please don’t go” comments to shame me into leaving and continue posting his drivel, or “inspiration of the Spirit” as he put it. Had I not gone on facebook that morning I would not have seen his post, as it was deleted. He had raised a serious matter in a solipsistic and frivolous way, and I had called him on it. Storm in teacup. This is not good for me, and it is most of the social interaction I get.

The woman had not needed a wheelchair a year ago. It’s a lot to process as people crave independence. She can roll up to the Quaker meeting and be welcomed, but she wanted to get out of her chair into one of the ordinary seats so that she would not be obviously the woman in the wheelchair, the disabled person, just for a short time. Three times, Quakers meaning well took away the seat she was wanting to get into, thinking that she wanted to wheel her chair into that space. I saw the effort she put in to getting out of her chair. She WOULD NOT GIVE UP.

Ah. That story comes to mind, as an illustration of determination and frustration. It illustrates what I am feeling, unconsciously. It helps me understand how I am now.

The medical term for neuro-diverse folks passing as neurotypical is “masking”. Women, particularly, mask symptoms, at the cost of crippling anxiety. One came to the notice of the doctors because of her anxiety, her high intelligence predicting neurotypical behaviour when she could not read it “normally”.

Quakers are my main face-to-face social outlet. I have written a report for Quakers on my last weekend away. Still procrastinating, I did it probably the last moment I could, on Monday evening. Had I been politic, I would make it a serious report about the serious business of the weekend, and instead I made it entertaining, with jokes, and my own concerns: as H would say, I was “pissing about”. What I wrote has my passion, emotion, my Drive to achieve, my desire to do what is good (as I see it) for the World rather than for me.

There is a huge depth of motivation in me. When I want to do something and persuade myself that it’s possible, out comes my drive. My drive is powerful, and it is frustrating that I can fritter an afternoon with half an eye on the television and half on my blog stats page or facebook.

-This drive, strength, creativity, can it not hold and help the part of you that is distressed? Are they too separate?

I think it does, and I am bringing my separate parts together.
slowly, too slowly-
I think I am pulling myself together, reconciling myself within, writing and suppressing less, conscious of more-
I see how important it is to me not

not to feel a feeling and yet

I am more- feeling the feeling.
Seeing how hard the barriers are and taking the barriers down.

Ability and disability

He can feel overwhelmed in large crowds, and even with four people he is uncomfortable, preferring no more than two others. I was wrong to say that is “almost an advantage” of a diagnosis of Asperger’s syndrome, but I think I was on to something: the diagnosis can help him recognise the difficulty, and accept it, where without a diagnosis a sense of inadequacy and self-hatred might make him deny it and try to fight it, and only get more flummoxed by it. And the diagnosis can help others accept it too. I would rather someone simply accepted it, realising that it is within ordinary patterns of human diversity, noticed it and allowed for it, but if he explains it to someone and that permits them to accept it, that is something I suppose. Not everyone will say, “Oh, go on! Don’t be silly! You’ll love it when you’re there!”

Introverts unite! We’re here, we’re uncomfortable and we want to go home…

This is part of a healthy teenage, to recognise such limitations and enforce boundaries to self-protect around them. If your boundaries are accepted they need not be overly rigid or protected with anger, and you can push them a bit, try things out, and be helped if you find it too much. If you recognise your gifts, and they are accepted, you can use them to help you flourish as a gift to the community. I have not quite finished my teenage yet.

Then again, we wanted to go to the cathedral. Initially we just parked any old place, and found a caff, and planned what to do next. “You’re going home tomorrow,” I said, “so I think you should get to decide what you want most to do”. I am not sure he had thought of it. He suggested the cathedral. The guide book had said this was dull, but we assented. Getting there was difficult.

Because of physical difficulties he could not use the Metro. He could not descend stairs, and anxiety stopped him using escalators. We might have difficulty with buses. I noticed there was car parking about half a mile from the cathedral, and suggested we park up and walk there. They had lunch in a restaurant, I sat outside with an apple, biscuits and Nutella, in the square by the Military Museum because I had spent too much on lunch previously. There was a busker, some trees and statues, lovely architecture, and a bus station.

Then we set off towards the Cathedral. It was not easy. The tiny cobbles on roads and pavements are uneven to walk on, pavements are narrow and roads are steep. Then again much of Portugal has steep hills, and many cathedrals are surrounded by narrow streets on mediaeval street plans. I find it picturesque. Half way, he needed to go to the toilet and spent ages in a caff.

I sympathise with the graffiti artist, and my photographing it like a pleased tourist is a similar gesture back.

And one of us pointed out the orange trees. I am glad to be somewhere so foreign: the architecture, the way of covering facades with ceramic tiles, and the oranges:

After, we waited by the cathedral while one of us went for the car. We could not all have walked back.

“They do not consider disabled people”, he said self-righteously. I wanted to say, no, you’re not thinking of others, of “disabled people”, you’re thinking of yourself. I was irritated by his inability, and by the restrictions it placed on us, irrationally feeling he could try harder. I wanted us to do things he could enjoy, and felt with these difficulties he should not have come to such a hilly place and spent some time planning what he could actually do when he got away. My acceptance is limited by how much I am inconvenienced.

He made a loud, wordless noise. “Just processing emotion,” he said, and I thought, how wonderful, to be able to do that and recognise it. I need to process emotion: I said several times how horrible I found Fatima, not because I thought he did not understand but in order to process my emotion. It is not just Aspergers.

He ate something that disagreed with him, and was sick in the car. At one point we were stationary in the fast lane of the motorway, fortunately in a traffic jam, as he was sick on the central reservation. And I noticed how he caught it in his lap, rather than the well of the seat, thinking this very considerate of him. Self-sacrificing, even. Generous. I can forgive a lot of non-standard behaviour for that.

I write of different people on different days.

Employment

I don’t know how interested you are at the moment in finding paid employment, but there is a significant opportunity coming up which I think might suit you if you are.

It would be good, I suppose, in so many ways. It would be a move sideways from my last paid job, much better than the checkout, or all the warehouses. I was looking grimly at the warehouses where the jobcentre might send me, where I might not have a common language with many of the workers and the employer could drive workers as hard as they liked. Swanston is in an excellent location for warehouses.

Yet- three jobs, all of which ended badly, which I found traumatic, with the trauma associated with my transsexuality and my inability to accept my femininity which only so recently ended- I have self respect for the first time- I can’t imagine going again into those dingy interview rooms for such conversations. I would be weeping and raging within a week.

So, no, I am not interested in finding paid employment, even though alternatives are precarious.

Liz B came round. I had forgotten, so was still in my dressing gown at noon. That’s OK. My living room was reasonably tidy. It is important to me not to be ashamed of how I am. She told me her awful news and I sympathised. She admired my dressing gown.

——————-

Should people who are unfit for work and have no other means of support receive support from the state, or be left to starve? Most British people would support benefits for the sick, though some might take an extreme Darwinist position, and David Brin’s near future vision in Existence says Everybody works. That’s a rule if you want to keep living here.

We don’t have such a benefit. Instead, we have a benefit which is paid to a very few of those mentally or physically unfit for work- indeed, not to everyone who is incapable of living without a carer. While some of those registered blind may be capable of work, again most people would think that they should be helped into work and paid benefits as long as they need, rather than bullied with the continuing threat of a sanctions regime, and fortnightly interviews. However, a person who is registered blind but has learned to use a guide dog and can “navigate around familiar surroundings”, and possibly a person who might be taught to use a guide dog, would not be entitled to ESA and would have to claim JSA: less money, liable to be withdrawn at any time.

I made the woman on the checkout laugh, with a bit of impromptu clowning, pretending to be unable to open my shopping bag. It lightened my day.

Coping

Through our encounter, Cara, aged seven, either sat on her father’s knee or lay on the floor. She was starved of oxygen during birth, and had the most severe brain-damage I have come across: apparently her eyes had been normal, but she was unable either to interpret the signals from them or to dilate her iris according to light levels, so the retinae would be damaged by too much light. She made wordless moans much of the time. Her limbs spasmed. She wore incontinence pads.

On the floor, she would lie still or twitch or writhe. Eating, she needed food pushed into her mouth. Her father treated her with loving care, and she did not seem to show the wild distress of a baby: perhaps he was expert in meeting her needs. He had split from his wife, and they shared her care.

Bangs and thumps from next door, and shouting. The music isn’t as loud as it has been, and tonight it was Dexy’s Midnight Runners: I might, just, listen to that myself. Then I did: maybe not. The parents have been over quite a bit, making sure she’s alright.

Well, what can she do? She can drink, which drives away the demons for a bit, dulls thought and feeling or makes feeling stronger but more bearable, because it can be expressed, then, in shouting or weeping which you might not do when sober. Except she has absorbed the lesson: drinking stops you dealing with problems without making them go away, so makes them worse. Drinking is a Bad Thing.

You do need other ways of dealing with things, though. She can turn her face to the wall, or shout. She has the repertoire of a sulky teenager, which I never developed with my own parents and which does not suit a woman in her forties- Steph, like me, is supposed to be more mature, and I sometimes think what I am doing it just one huge sulk.

The three of us are completely and totally handless. Incapable. What’re we like? And yet, somehow, the three of us are OK.

Snellens

This is a Snellens chart. For such a familiar object, it is strange that so few people could name it. It makes me think of fighting lying doctors.

I had already got a doctor sacked for completing his disability assessment form in a manner untruthful and prejudicial to benefit claimants, my clients. Then I noticed another problem with these reports.

The Snellens chart is a precise tool, for a precise assessment of particular sight problem. However, to use it properly, it needs to be set up correctly, at the correct distance and angle from the subject, in good light. The EMP form requires the doctor to answer whether a claimant’s sight with both eyes together is better or worse than 6/60, that is, that he can see better at six feet than a person with good sight would see at sixty feet. Usually, this is checked by counting fingers. The doctor need merely be sure that sight is better than, say 12/60, as 6/60 is particularly poor and most claimants do not have particularly poor sight.

So it was unlikely he was using a Snellens chart, and particularly unlikely that he was doing so correctly. Again, I got several claimants to agree that they did not remember the sight test chart. They might not remember such a detail, and might give the answer they thought I wanted, or be hostile to the doctor who found them fit and not want to say anything in his favour. But I asked, “You know the sight test chart, big letter at the top, row of tiny letters at the bottom? Did Dr P use that when he came to examine you?” All said no. I do not think all my clients were lying or mistaken.

Possibly one might spot malingerers more easily with a chart than with counting fingers. I do not know how that would work; if you do, please enlighten me.

So I am reasonably convinced Dr P was lying, and that his lie here, the false statement that he used a Snellens test, rendered the rest of his report doubtful. But when I took this argument to the tribunal, the panel told me how wicked it was of me to impugn the integrity of a professional man. I burst into tears in the tribunal waiting room, became depressed again, and shortly after stopped doing appeals. Instead I went round people’s houses completing claim forms, a less onerous task, though with better results in terms of money gained for hours spent.

That was 2003. Why dig it out now, have a wee cry, feel the anger and resentment again? Because at the time it was yet more proof of my inability to achieve anything, and also my uselessness and weakness for feeling that anger and resentment, and now I can see it as evidence of my integrity, commitment to the truth, cleverness in creating an argument and care for the clients. If it was a failure, it was against strong opposition and heavy odds.

I am not listening to the inner critic about it any more. My feelings were a good, feeling response, and I can at last acknowledge and accept them. My actions showed integrity, creativity and bravery.

Beautiful woman

Cerrie Burnell is beautiful. She looks younger than her 32 years, which is a good thing for a presenter of telly for 4-6 year olds. She was born with her right arm ending just below the vestigial elbow. When she started presenting CBeebies, there were complaints that a disabled woman should not be doing this job. How do you explain to children that someone has no arm? Disabled people should not be seen or heard.

Standard issue lesson: celebrate people for who they are, what they can do, rather than judging them for what they cannot. What they cannot do is not useful information. But have a look at this Sky article. While it rightly gives the answers from disability charities, the BBC and Ms Burnell herself, the main picture it prints is head and shoulders, so that its more delicate readers will not see the Arm. It prints the above picture, lower down the page, and much smaller.

I suppose it helps that she is very pretty. These presenters tend to be pretty. More than one difficulty to overcome in getting this job might have been too much. We are only making the progress we are making. So- is it not wonderful that she is so visible? Even if that is not her intent, she widens public acceptance of difference.

That is what I want. Simply to be, without that self-consciousness, the internal nagging voice saying “What will people think?” which always misjudges what they actually think.