Sunday, 1 May 2011

The Good, the Bad and the Ugly. Blogging against disabilism.

I don't often blog entirely on a disabled theme, but today, for "Blogging against disablism day" I will.

As I read through other peoples blog entries I realised something.

I do not to expect equality.

Yes, in law, under the DDA there is a foundation for equality for disabled people. But in society there is so much attitude that is, simply put, extremely prejudice.

I used to work for local government. When I got my job I appeared to be an average 22yr old, but 2 years later I was wheelchair reliant with multiple complex medical issues.

For example, at work I experienced the Good, the Bad, and the downright Ugly.

The Good

From my direct colleagues I experienced a phenomenal level of real equality. I was just 'one of the team'. When someone offered to get me a drink it was on the same casual level that they offered to make one for my neighbors. When I needed specific help (like assistance relocating a dislocated wrist) I could ask and help would be given without fuss, without any debt being placed on my shoulders.

Over half of my direct colleagues had close personal experience of disability. And the rest of the office followed their lead. I was first and foremost a team member. Secondly, slightly mouthy. Thirdly, a great shot with rubber bands....and somewhere at the end of the list of my contributions to office life would be "wheelchair user" and "disabled". Unless it came to a flight of stairs - then I would be "A colleague who is jolly well going to get to this meeting, so facilities team, pull your finger out." - And the facilities staff in general were marvelous at helping without leaving me 'in their debt'.

So I had a circle of safety. Of respect. Of equality.

But this circle was small. Very small.

The Bad

For almost a year our office was 2nd floor in an old building. One destined for demolition. My direct colleagues remained the same, but suddenly I was reliant on the corporate body to allow me equality. I don't think the 'corporate body' ever saw me as a colleague, valued team member, or someone who got achieved a lot. Only as an annoyance.

The lift kept breaking. Somedays it would not go at all and I would be unable to reach my desk - and have to return home. Other times I'd be stranded upstairs, praying it would be fixed before night-time. Usually it would stop an inch or 2 above or below the ground floor so that I could not exit on my wheels without dislocating my shoulder or wrists, so I had to have someone help me out of the office every day.

The DDA talks about 'reasonable adjustments' - the building was going to be knocked down so it was unreasonable to demand they spend £100K on a new one. So I accepted the corporate refusal to do anything, and was grateful for the fact that I was still employed.

I had trouble opening many of the internal fire doors. I even had to telephone a colleague to open the bathroom door for me as I got stuck inside. There were raised door thresholds for me to contend with, and the kitchen layout meant I think I tried using it twice during the entire year. Access to the staff canteen was up a ridiculously steep ramp which deftly took my independence. But as I said, the building was going to be knocked down so it was unreasonable to ask for any changes at all.

It was only when I broke down in tears when talking to my union rep about how tough I was finding it having no independence that minor changes started to be made - and my colleagues fought the system and got some of these cheaper issues sorted. One colleague even fitted an air-con unit for me himself because repeated requests to the powers that be had got nothing but promises.

I no longer expected equality. I expected ignorance. I expected complaints that my requests would inconvenience others, or cost money that would be better used elsewhere. I felt guilty that by asking for easy and safe access to a toilet, my line manager had lost several thousand pounds of an already tight budget. She never told me this, but I was frequently reminded by HR and certain members of the facilities team (i.e. the ones not mentioned earlier).

And above all I had learnt that if I wanted to keep my job, then it was me who would need to compromise. That if I asked for changes, I would make my team - who's work I was proud of and who I hold in great regard - suffer.

When I tell this to people, I am still surprised at them being shocked.

The Ugly

A year was spent planning the move to my final office. It had been specially refurbished, costing hundreds of thousands of pounds. I put in my disability related requirements as soon as I could - approx 7 months in advance. I asked for wheelchair access, and for a cool working environment with air conditioning (a cool environment was medically necessary)

There were meetings, discussions, floor plan drafts and re-drafts. Access issues were raised in disability forums, the health and safety working group and senior management team meetings. Including a meeting in public - THE MAIN RECEPTION AREA - to discuss my personal disability issues. I repeatedly gave the same information only to receive plans that made no allowance for it, or to be told that I couldn't expect the move to be planned around me. There were promises that the temperature 'would be fine' ' would be sorted' and a point blank refusal to allow me to see a member of the occupational health team - the very people qualified to come up with practical solutions to the barriers I faced, and part of the same organisation.

I was repeatedly told I was being unreasonable and that I shouldn't use the office move issues as a political thing. Political? I just wanted to continue in the job I love, and not loose what health I have over an office move. One week I spent most of my working hours in tears as I received email after email denying me equality, independence, and creating a scenario which I knew could take away my job and my health.

And what did I get out of it?

I had got them to change the thick, wheelchair-halting entrance lobby carpet so I could get into and out of the office on my own.

But:

I had no access to the kitchen - they couldn't change the door "just for me", and "She couldn't use it anyway because it is narrow."

I couldn't access the canteen because "It would cost too much to replace the carpet on the upstairs landing". Even though there was an accessible service lift that would have been perfect - they only needed to tell me it existed and let me use it!

According to Human Resourses management, I was "being unreasonable to ask for access to a kitchen". And Health and Safety informed me that I was "Not allowed to eat hot food at my desk, or have a kettle I could reach nearby because there couldn't be one rule for me and one for everyone else."

They hadn't even serviced the air conditioning, let alone fixed it. The only chance I had was to move my desk to a small, isolated office at the far end of the building, which had a semi-functioning cooling system. I couldn't open the door to it and worked in there alone. Most days, every time I left my box I put my health at risk due to the warmth in the general office - to use the bathroom or see another human face. Sometimes even my box got to warm and I would end sat in the cold outside for an hour before recovering enough to drive home safely.

Eventually I got to see Occupational Health. They had cheap, workable solutions for practically everything. But it was too late. The constant strain that my faulty autonomic system had gone through with the temperature issues (and the stress) had taken its toll. I collapsed. Thoroughly. Unable to lift my head or speak coherently I went 'off sick'.

To add insult to injury, Facilities Management proceeded to install the air con unit that I had been asking for since day 1 of planning the move, at a cost of a few hundred pounds.

But it was too late.

I am now medically retired. And my direct manger and line manager almost lost their jobs because they championed my cause and fought for my right to work in a safe environment.

And yet the other day someone effectively told me "but you don't get discriminated against like gays do". Really? Is the above equality?

On paper I may be equal, but in reality when faced with large organisations and ignorant individuals, society says I am not. I did not even have the right to be safe. Let alone employed.

I have my small circle of respect. Of equality.

Please use your attitude to expand this circle, and do not take it from me.

15 comments:

  1. Hi, I’m not able to take part in BADD by writing a blog this year but I’m planning on posting a list of the blogs on my tumblr and I was wondering if I could include yours.
    Please let me know if this is okay.
    Becca

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  2. Yes, you can include mine - so long as you credit it to me of course :)

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  3. This is unacceptable stuff; writing about it and sharing it can only help change the culture we live in. (I hope).

    THank you.

    WCD

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  4. No words for how awful that is. And it's all so "equal" now, apparently. Thanks for sharing such a painful story.

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  5. This is appalling. I'm so angry all these terrible things happened to you.

    And yet, I wish I could say I was surprised.

    If you were in the US, I'd say, "Sue their asses off!" But I don't know if the DDA allows for that.

    Also, I want to say, as a disabled lesbian, the oppression I have experienced as a disabled person is waaaaaay worse than what I have experienced as a gay person. I know this is not true for everyone -- I live in a very gay-friendly area -- but still, at least most people now realize anti-gay discrimination exists, whereas even progressives will argue that there is no disability discrimination.

    Thank you for telling your story.

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  6. I don't know how I missed this event...although I was for a change not home Sunday.

    I may have reposted my video again, it is long and boring for many. I was rambling really about the effects not just of the illness but the abuse I feel from the system.

    Amazing share, sending a gentle unconditional cool hug

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  7. This is awful. I used to work in local government too, I am shocked. You had rights, couldn't the union be more helpful? Could you take them to an industrial tribunal?

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  8. Hi Hannah, I'm writing a dissertation on disability and human rights, would it be ok to reference your blog? Obviously I will have to reference any direct quotations, and would include it in my bibliography.

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  9. Really outrageous! I'd really like to kick some ass right about now after reading this!

    I can't even be all like "Thanks for sharing your story" etc ... JUST PLAIN MAD.

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  10. Oh, this really chaps my butt. Thanks so much for posting about it!

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  11. This sounds an awful lot like my experience, but with a different emphasis. As a software engineer with problems sitting for any length of time things were inevitably going to get complicated, but for a long time friends in junior management bent the rules to ensure that I could manage and I found myself a slot where deadlines came once a year, which let me work around the days I could barely think straight.

    Then one project wound down, and the manager on the new project proved to be utterly clueless. When he demanded everyone give daily guarantees of what they would complete I took him aside, explained that was incompatible with my disability and said I needed not to have that asked of me as a reasonable adjustment. He promptly berated me for being negative. The next thing I know my uber-boss, the man responsible for my career, is berating me in public for being no use to him if he can't put me under pressure. Within a week I'd been transferred into the first of a succession of dead-end posts, with him admitting that he was refusing to put me into posts at my own grade because he felt I was a risk to his schedules, yet claiming it had nothing to do with my disability.

    I escaped into a secondment, made a considerable success of it, taking on extra responsibilities, picked up praise from both sides of the Atlantic, and still the uber-boss claimed that my performance was below par, worse, they refused to extend the secondment and dumped me into another dead-end, deliberately setting me up for the impending round of redundancies.

    By then we were in the formal grievance process, with their tame quack claiming severe pain wouldn't affect my work, no matter that they were in possession of a report from my specialist saying precisely the opposite. I made something of a legend of myself by escalating the grievance all the way up to director level and convincing our notoriously hard-nosed director of engineering that she couldn't rely on a medical report at odds with that from my own specialist when the EHRC agreed with me that that was untenable. Even then they commissioned a new report from my specialist rather than rely on the ones they already knew backed me.

    Despite being completely vindicated by the new report, their own interpretations confirmed wrong at every stage, their response was to turn around to me and say that if my disability would inevitably affect my work, then they were justified in discriminating against me. They seemed rather surprised when we ended up in an Employment Tribunal.

    Worryingly I suspect they were probably better than most employers out there, yet they were utterly clueless, and willfully disablist, from project management clear through to directors.

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  12. It sucks doesn't it David. :( I hate that so many people have experienced such ignorance, and the stubborn refusal to think logically and open mindedly when it comes to disability. It is as if any request for adaptions is seen as 'milking it' or 'making a point'. The grievance I submitted was upheld. They acknowledged error, but the same people still hold the same jobs and the same power :(
    And yes, Anonymous, you can quote from my blog in your dissertation

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  13. I live in a sheltered building - have since I was 52, 14 years. They've just installed firedoors which are almost impossible to open! Why, I've no idea, the old ones where perfectly sound and had automatic hold-backs that closed when the fire-alarm went off.

    The new doors I can just about manage on foot, or in my powerchair, but I'm about to get a lightweight manual chair that will open up places too small to use my powerchair - like the pub! More importantly, I can use it in my flat. It will also provide some much needed exercise.

    However, with a manual chair there is not a hope in hell of opening the two firedoors between me and the entrance.

    I could, were I on foot, using the chair as a walker - but why should I? So I foresee a confrontation, but if they can spend money on doors that were totally unnecessary, they can spend a bit more to accommodate me.

    They're also(across their entire estate), trying to force those of us with scooters to buy insurance, because scooters cause damage - well, not as much damage as chairs and rollators (neither of them mine, I hasten to add), and I have the pics to prove it.

    I was part of the consultative process, and I've pointed out right from the start that unless they impose the same condition on manual chair users, rollators, baby buggies, Zimmers - in effect, anything and anybody capable of knocking lumps out of the walls and doorways, singling out scooter users is pure discrimination.

    I've also asked for proof that scooters are, indeed, the problem, and not just an assumption based on prejudice. Didn't get it.

    It's going to get interesting pretty soon, but I was a union rep in a previous incarnation (pre wheels), and I'm sure I can deal with these clowns!

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  14. Came here via BADD (which I am reading through very very late)

    How awesome that you had great colleagues ... but the way everyone else treated you is awful. Most of the things you were asking for sound to me like they COULD have been so simple and cheap to implement if they had simply PLANNED for them all along (and actually bothered to LISTEN to you) instead of blowing you off.

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  15. Every time I read stories like yours I want to scream and cry in frustration. I have a child with autism, and while she has no physical disability, I have learned so much about the ignorance and bigotry that exists towards people with disabilities, including those with physical and medical needs.

    I feel it really is the last taboo, and currently disabled people are being victimised more than ever due to the government campaign against benefits claimants. If they were so keen for people to get back to work, they will have to ensure that work environments are suitable, and that colleagues are open and understanding of people with complex needs.

    Until these attitudes are changed, what chance have people got?

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