cerebral palsy

Writing for teens

I’ve never seriously considered writing for teens, though my daughter has asked me often, if I would consider it.  So it comes as a bit of a revelation to me – not for the first time, I realise – that young adults, teens from all over the world enjoy reading my memoir, Trapped.  In exploring my life as it was, I never set out to consciously write a book for young adults, though my prose style tries to avoid over-sophistication.  (Even as I write that, I worry: my daughter asked me recently if I swallowed a dictionary…do I still use three long words, where one short one would do?)

Last year, I was delighted to hear of a class of seventh graders, twelve year olds in the USA, who were set Trapped as a reading text by their class teacher.  And recently, Sam Keane sent me a review, which I have included as a recent blog post.

I have always assumed that Trapped, being about a depressed, angry and sexually frustrated woman who only wants to be happy – to be allowed to be herself – would place it firmly in the ‘adult’ category.  So how do I feel, knowing that youngsters read about my sexual frustration?

It may be that teachers, using the text as a study tool for young adults, delicately sensor the text; or more probably, since I was at school, there has been a revolution in attitudes around sexual experience.  My daughter, I know, benefits from a full and candid exploration of attitude to sex at school, which contrasts markedly with the tiptoeing and cringeworthy explorations that we endured in late primary education in the late 1970s, and which left us with more questions than answers.

Perhaps my attitudes are well out of date, and what I consider cringeworthy and embarrassing is merely part of life, these days.  It could just be that young adults are less phased, that they listen, decide and make up their own minds more readily about what they experience.  If that is so, then I am pleased, and I applaud the sophistication of young people.  They, so much more than my generation, tell the truth and expect to hear it, so are unlikely to be phased by a few truthful, passing references to the sexual experiences of one woman who, if she’d had her way, would have loved to find more ways of enjoying love.

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What Remploy Did For Me

When I was a beneficiary of its expertise, Remploy was still owned by the Department of Work and Pensions. Following extensive factory closures, it is now in private hands, owned by Maximus and an employee trust. Since the reorganisation, what has happened to its disabled employees? They have not just gone away, and there will be hopeful for suitable openings, as anxious as the next person that their last job will not become a distant memory.

I was in and out of work as a solicitor over a period of twelve years.  At one time – how embarrassing to admit this – so poor was my bargaining position that I desperately needed help to regularise my pay and paperwork. My well-intentioned boss was a single practitioner too busy to deal with it. Remploy agreed to accept me onto their books and was able to set my pay to rights, provide me with pay slips, sort out my national insurance contributions and offer a pension, as well as day-to-day advice and support. During periodic visits, my Remploy supervisor saw me working and asked why I didn’t find myself a proper job: funding limits meant that I was at the top of my pay bracket and likely to stay there. He obviously felt I deserved better.

Taking his words to heart, I did find another job quite easily. Because my new pay increased substantially, Remploy could not continue to support me and I bid them a fond farewell as I prepared to take my chances on the open market. But pay was only one part of their remit. They provided understanding, a position of bargaining strength and expertise, all of which I lost when we parted company.

Aware of my limitations, I took another post advertised as part-time, thirty hours a week. But as always, the devil is in the detail. To do the job, I was expected to accept unrealistic deadlines set by other people, and was forced to work after hours. The pay was great, but nothing was added for overtime, which stretched uncomfortably until I was easily putting in forty hours a week. For an able-bodied colleague that might be a nuisance. For someone with a disability, the effect is more insidious. After six months, I had to rest, but when I asked for a day off each week – planning to fit thirty hours into four days – twice my request was refused without any discussion. Exhausted and faced with targets I struggled to meet, I had to leave. These days I work from home, aware that when I put in a forty hour week, at least I can do so from the comfort of my armchair and take frequent breaks. How many employers can afford to be so relaxed?

For those of us who might wish to work independently in the job market, the truth about Remploy is that their continuing support has been vital for longer-term success, though this is not always obvious at the outset. Remploy helped me to stay in work because they understood my practical dilemma, which no other employer would take account of in the normal course of business: I needed to be able to pace myself. Remploy were able to find a formula that worked. In so doing, they enabled me to take a longer-term view. Once their support was removed, I soon found myself unable to manage in an environment unapologetically geared to an able-bodied workforce.

According to the Sayce review which recommended the closure of Remploy factories, funds available to make finding a job easier are better targeted at disabled employees directly. In the same way that disabled consumers have the right to visit shops unimpeded, employment seems increasingly to be treated as a matter of access. The disability alliance website notes that “Access to Work helps disabled people and employers with adjustments to premises, transport costs and other in-work support” all of which certainly help. But what happens once an employee with impairments has a foot in the door?

Overwhelmingly, employers consider one aspect of work: their financial costs and gains. While disability discrimination legislation has made great strides forward, there remain many aspects in which the market driven-economy can skip neatly around its obligations to disabled employees. In hidden and insidious ways, a disabled employee often remains at a disadvantage, no matter how many hours are devoted to employee relations or however many policies exist to allow flexible working. Unfavourable comparisons around productivity, punctuality, sociability, public image and teamwork remain.

A friend of mine who is disabled and writes plays about disability wrote to me, “(we) should be judged according to others in your circumstances”. But how many disabled people can keep their place securely in mainstream employment? It is a difficult conundrum. In the Remploy factories, impairment has always been the norm, which was at least useful when it came to making meaningful comparisons.

So long as each former employee of a Remploy factory has found work and access to the same levels of continuing support, the changes in workplace structure and ethos may not impact too badly. But somehow, I doubt that the necessary levels of support will remain available over the long term.

Remploy has efficiently and quietly gone about its business over many years. If it had been making a lot of noise and grabbing the headlines, its contribution to the lives of disabled adults might not have been so easily refashioned to suit an ideology which assumes, on scant evidence, that for a disabled person the difficulties of finding and keeping a job are easily sorted with a bit of remodelling. The architects of the changes will not be waiting around to pick up the pieces if their optimism turns out to be misplaced.  Yet, as news reports of the time indicate, barely one third of the employees made redundant during the privatisation processes have found re-employment. Old-style supported employment has its place in the scheme of things, after all.

I hear that Labour are planning to re-nationalise. Will they re-nationalise Remploy?

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They call me disabled

I object to being called a ‘disabled’ person, or even an impaired one.

Admittedly, the social model of disability marks a distinct improvement on the whole debate. The social model maintains that we are not disabled, it is the system that is disabled in that it fails to accommodate us. Yet, the social model still preserves the concept of disability and some of its terminology, which then allows others who have no interest in the niceties of theory to keep using these terms of reference for their own ends.

After years of optimism, the words and theories still delineate classes of person who fall outside some categories and into others. Being classified, even in passing as ‘disabled’ or ‘impaired’ gives the impression, intentional or not, that people with disabilities are a race apart.

The truth is far more subtle. We are all disabled, in which case, why make any distinction? It is no badge of honour to me that I have been defined in so many aspects by what I cannot do. Political and social adherence to impossibility is frustrating; emotional entrapment by a peculiarised self-image is a recipe for life-long depression and self-hatred.

Each of us, whatever we are capable of, is entitled to define ourselves as we see fit. For the rest, we are what we do. Beyond that lies a sea of irrelevance.

It was my father who first made clear to me, how insidious are casual references to prejudice. “Why do we refer to them as ‘black youths, Fran? In the news reports, we never say, ‘White youths….’” That was in the seventies. How much have things changed?

I grow a conviction that many aspects of identity – generational difference, gender, size, ethnicity – are ascribed by others, and used continually, to make themselves feel comfortable.

Everyone, no matter who they are, deserves to be treated with respect, and to have offered to them the individual consideration that allows them to live a full life. Why then, would I choose to define myself as ‘disabled and proud’? How can I ‘self-identify’ as disabled? I do not, nor ever have, believed myself to be ‘disabled’, but to have been given those characteristics and abilities that will inform my journey in this life, and help me to learn the soul lessons that I came here to learn.

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I was invited to a conference on supporting adults with impairments in the workplace. Yes, it was really good. I enjoyed meeting people and comparing notes. And I’m very grateful to the organiser for inviting me along to an event on a subject which is close to my heart, even though my contributions tended to reflect my personal experiences rather than comment directly on the nuts and bolts of policy, strategy, and the many schemes which exist to help adults with impairments make a smooth transition into mainstream employment.

As anyone who has read my book will know, I was unable to maintain the transition to full-scale mainstreaming after support which I had previously had from Remploy was withdrawn because, to put it baldly, I was going to be earning too much. After almost eighteen months, I quit from my last professional post, suffering from profound depression and anxious about my future.

My presentation at this event did not go as I had hoped it might: though it is always hard to gauge the value of our own contributions, I did not do well, which I regret. Because of appalling conditions on the road and lack of parking, I was very late to arrive at the venue, and because I did not stick to script, my presentation lacked cogency.  But the organiser had very kind things to offer about what I did say, and I am grateful.

The dust is beginning to settle, and through all the papers and power-point presentations, one remark offered early on really sticks in my mind. Asked about reasonable adjustments and the challenges of hiring adults with impairments, our speaker spoke and then added something like, ‘And we might have to consider whether employing anyone with impairments might in fact, put other colleagues at risk.’

Is it just me, or is that statement appalling? I wish – oh, how I wish – I had stood up and challenged it openly at the time. But I was newly arrived and didn’t want to shoot my bolt too soon. I wish I had challenged the speaker to explain themselves. For it seems to me to be an appallingly prejudiced assumption to make, that employees with impairments are likely to put their (able-bodied) colleagues at risk. I beg your pardon?

If any employer even suspected that, I certainly would not want to work for them. It seems like the kind of half-baked reasoning that used to be touted as sufficient excuse in the seventies and eighties: ‘You can’t come on my boat in case your drown’ – ‘you can’t come into the cinema in case there is a fire….’ I thought we were getting past that.

I used to be reasonably optimistic that political and work place progress towards inclusion was inevitable. Perhaps, since in the public sphere things have indeed moved on, one day the SMEs will catch up and we will see full-scale employment and ‘mainstreaming’ as standard. But if this is the type of comment we are still hearing from well-respected professionals in the field, perhaps I have good reason to be pessimistic. I hope I’m wrong.

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