Lost and Gained
- 2 Sep 07, 12:14 PM
In life, I believe that whenever something is lost there is always something to be gained from the experience.
What have you lost and gained from your experience of disability?
These are the issues that I have grappled over the years whilst I have watched my peers graduate with degrees, travel the world and move all over the country to sustain their careers and relationships.
What I have lost:
1. Restrictions on my freedom to travel anywhere I wish without paying expensive travel insurance fees or worrying about getting ill
2. A life insurance policy without suicide exclusions
3. The right to do jury service
4. The right to drive for short periods of time
5. A higher education with my peers
6. Several jobs (through sickness absence or discrimination)
7. My dignity and privacy (in the psychiatric ward). It could have been much worse. If I had been Sectioned under the Mental Health Act, I could have lost my right to freedom and to vote.
8. Several friends (but were they really friends at all?)
What I have gained:
1. Several close friends
2. Family support
3. Several new jobs
4. Many skills in contrasting areas
5. A wide diversity of work experience
6. The ability to survive an episode of severe illness and bounce right back again (isn鈥檛 that severe human endurance over and above what others experience?)
7. An understanding of the fragility of the human condition
8. An understanding what it is like to be at the mercy of the mental health system
Would I change anything?
I can鈥檛 change the fact that I have bipolar disorder but I would change the way it has been medically treated and how I have been treated in society and at work because of it over the years.
In the last 15 years, I believe that many advances have been made in medication (with less severe side-effects), and treatment (Community Mental Health Team inter-disciplinary approach, Care Plan Approach, assertive outreach, self-management, talking therapies) but these are all hampered by severe under resourcing, particularly with regard to the availability of psycho-social therapy.
It is also vitally important that service users are recognised as active stakeholders in this process and allowed to fully participate and have a say in their care. Otherwise, it won't work.
Unless the Government recognise that quality resources are the answer, rather than the draconian legislation of the Mental Health Act 2007, then we are going to revert back to the dark ages of 20 years ago in terms of humane treatment.
The Disability Discrimination Act has already made a significant difference to my life. I cannot comprehend how I would have coped without it. I would tighten up on disability legislation even further to make it even more difficult for companies to discriminate against people with disabilities.
What have you lost or gained as a result of your disability? Would you change anything?
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Advice and support for combating discrimination at work for people with bipolar disorder and other mental health conditions
Comments
Interesting topic.
What I've lost:
1. Money, through jobs that I haven't been able to keep hold of, mainly.
2. My long term relationship, and at this time I can't see myself ever having another.
3. The emotional freedom to go wherever I like, whenever I want.
4. My spontaneous nature.
5. Friends. Social life. Although that's starting to pick up a bit more nowadays.
6. The ability to be rational and sensible about what's going on inside my body - my anxiety sensitivity is off the scale.
7. My self-respect, although I'm working on that, and on realising that there's more to me than my impairment.
What I have gained:
1. Knowledge.
2. Different friends. People who 'get it'. People I can be myself with.
3. A career change; this is an indirect result, really.
4. Empathy and understanding with others.
5. Creativity.
6. The ability to recognise an 'up period' - I've trained myself to physically *feel* the fog lifting - and to dive in and milk its potential for all it's worth.
7. A certain militance about the pharmaceutical industry and its potential to damage people, and how wrong it is that normal human emotion is medicated in the name of profit.
Would I change anything?
Sure. There's lots I'd change about my personal circumstance. Most of the time it's a pain in the ass.
On a broader scale, I'd like to change the stigma that is still attached to those of us with mental health conditions. Even in this day and age of inclusion in the DDA, a day off work because you simply can't get out of the door without a meltdown, when more often that not you'd be able to work from home if allowed, is still not seen as acceptable as a day off with the 'flu, where more than likely you'd be laid up for a day not contributing anything. That needs to change.
I'd like to change the availability of mental health services. They are still woefully inadequate - not helped, of course, by the continuing closure of crisis services (my local hospital, Hammersmith, didn't even know where in the area I might be able to find one...)
I'd like health professionals to realise that not every condition that we present with is as a direct result of our mental health issue.
I'd like to change awareess of the side-effects of certain medications, and the additional problems these can cause.
Lots of things. I'm sure I'll think of more, but will this do for starters?
What I've lost:
1. Childhood - I never knew what the other children were doing or why, and I guess I never will.
2. Parents - I had two people who lived in the same house as me, but apart from the biology they never really related to me a great deal, and I never really related to them. I got a chef and a chauffeur.
3. Education - I came out of school with solid but unexceptional (for those days) GCSE's and A-levels, but I had the potential to be extraordinary and no-one ever managed to help me realise that.
4. Opportunities - Having not had a diagnosis until reaching adulthood I had no explanation for my self-imposed social reticence, and no way to convince people that there was any reason for it.
5. Art - Everybody loves it, in one form or another. TV, Film, pictures, sculpture, music... it's just background, but I'd love for it to be something more than that.
6. Individuality - I now have a diagnosis... and suddenly I'm the Rain Man, like every single person in the entire world on the autistic spectrum is a mathematical savant. It's called a spectrum for a reason, yes?
What I've gained:
1. Clarity - Without any of the clutter of body language and the like I actually listen to what people say. I miss what they think they mean, sometimes, but the words can be revealing too.
2. Focus - I can sit and stare at numbers on a screen, sorting them into order for hour upon hour, and I feel rewarded at the end of it. Job satisfaction is a hell of a lot easier to find than a job is.
That's it, really, but then if you gained much from it it wouldn't be a disability, would it?
Would I change anything?
Oh yes. In an instant. I've passed this horror on to my children, and there's nothing in the world that could make up for that. Unfortunately, I only got my diagnosis through the process of having them diagnosed, by which time it was a little late.
Beyond that, though, I don't really feel like I'm part of the human race - I never did, but now I can rationalise it. Most of the other disabilities I hear about are about the misfunctioning of a particular element of their body or mind, but autism colours everything: it's a completely different way of thinking and being. It's like being part of a different species camouflaged as human and trying to find a place to fit in, and because it's not a world geared to how you think and feel there's very little that actually impacts upon you emotionally. I live in a very grey, unremarkable, uninteresting life in the middle of a vibrant world. I'd love to be able to change that.