Tag Archive | Disability

I’m Disabled, Shout It From the Roof Tops

Recently on Facebook an interesting discussion came up on one of the groups I am in.  This is a group for people who have had total hip replacements at a younger age than normal.  Someone posted the following question:

‘If you have a THR (total hip replacement) and are doing great, are you still considered a person with disabilities?’

One of the first responses was, ‘I have NEVER considered myself disabled’ and there were quite a few more like that.  A lot of people being very quick to dismiss ever having been disabled at all made me feel quite sad.  As a society do we see it as so shameful or insulting to be disabled that we deny it and try to hide it?

My first thought was they are fools to deny being disabled as they will have missed out things that could have made their lives a lot easier.  For one thing my disabled parking badge had been extremely useful during my worst periods of pain in my hip, so that I could still go out and enjoy places without having to walk too much.  I could not have even gotten that badge without my GP signing to say I was disabled.  Then there is the financial benefit of officially admitting to being disabled so you can get disability benefit of some kind, which helped me pay for things like taxis to places most people could have walked.  Plus all those discounts they were missing out on at the theatre, leisure centre, theme parks and so on, when either you get a cut price ticket or your career/ friend or in my case my mum could get in for free.

For me I could hardly remember a time when I was not disabled having been diagnosed aged seven with my hip problem.  I soon got used to the idea and it became normal for me to consider myself as disabled.  However if you become disabled later in life due to an accident or illness and did not grow up as disabled I think it must be a lot harder to accept.  It can mean having to adjust your sense of identity  and can bring on a lot of strong, mixed emotions.  Before being disabled you may have had an idea of what you think it is to be disabled, ‘Whatever image you had of disability will be the image you first apply to yourself” (Life on Wheels: For the Active Wheelchair User, by Gary Karp).  You may have seen disabled people as unable to be independent, unable to have families or careers, which may make you feel like you have now lost all that in your life.  This is of course untrue of being disabled, but it can take a while to find that out and in the meantime you may try to deny the disability to yourself and others so you can carry on without the fear of change.

Trying to act normal as if your disability does not exist is often known as passing or passing for normal.  There is nothing wrong with wanting to be as independent as possible and being a part of everyday society, however passing is not about that, but more about the problems denying being disabled can cause.   This person with Fibromyalgia writes a good example of passing,

‘I had cut off anything that required long walking, like trips to the zoo, or going window shopping for the day, etc. etc. Slowly but surely, they had just dropped out of my life. As I could no longer do them “normally” meaning on my own two feet, without paying a price of extreme pain. Not to mention, being miserable the entire time.

I would do things like take a long ride or plane trip and would fall on my face when I tried to walk, after being in a forced legs down position for hours. I did this to myself, repeatedly, rather than let the flight personnel bring a chair up to the plane for me. I avoided travelling on account of it.

I finally said to heck with normal ! Got myself a wheelchair, or had them bring me one and went back out and did things again. I finally had to make a choice of, use the chair, or just let such activities slide out of my life … forever. I chose not to permit that to happen,’ (“Passing for normal” cultural pressure and disability).

I can understand why people try to pass themselves off as not disabled.  Quite often society can make you feel like a victim or as a problem.  It can be hard to convince some people who having a disability does not mean you can’t be independent and that you are not going to be a burden.  As Gary Karp writes ‘the boundary between making the most of your abilities and trying to pass as not disabled is a fine line’. However there often comes a point where either you give up on life and ever doing very much or you give up caring what other people say and think about it and just get on with living your life the best way you can for you.

My favourite response to the discussion on Facebook was ‘If you can hardly walk I think that makes you disabled.  All this brave stuff is great, but sometimes you need help.’

I am not sure of the actual answer to the initial question posted on Facebook.  I feel like I am temporarily not disabled any more as my new hip lets me walk and stand longer and I am not in very bad pain frequently.  However I know false hips tend to last about fifteen to twenty years, then they wear out and start to cause pain again.  Then I may well feel disabled again.

I have more than come to terms with calling myself disabled, in fact I kind of like it now as it means I have something interesting to talk about when I meet new people.  Being disabled has led me to meet some of my closest friends who are also disabled and found we had something that bonded us.  Being disabled is just part of being me and I am not going to deny a part of myself.

 

 

 

 

 

 

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Ableism

Words such as sexism, racism and ageism are now in common usage and help people understand that discriminating against people due to their differences is wrong and often offensive.  However a word to describe disability discrimination is not so well-known.  I had to do an internet search to find such a word as I could not think of one of the top of my head.  The word Google came up with was Ableism.

According to Wikipedia ableism ‘ is a form of discrimination or social prejudice against people with disabilities.’  Often also known as disability discrimination.  Ableism has an entry in the Oxford English Dictionary, which traces the word back to 1981, yet the word is still not well-known.

So what is ableism?  For a start ableism is against the law.  In the UK disability discrimination became unlawful when the Disability Discrimination Act of 1995 came into being, which was later updated in 2005.  Since then the Equality Act of 2010 has formed the basis of anti-discrimination law in Great Britain.  The European Union Equal Trade Directives are implemented in the Equality Act, meaning it is illegal to discriminate against disabled people in both UK and European law.

The Equality Act outlaws discrimination in access to education, public services, private services or premises, renting or buying property and in employment regardless of age, gender reassignment, marriage and civil partnership, race, religion, sex, sexual orientation and disability.

This means that disabled people have the same rights as non-disabled people.  Children should be able to access a good education regardless of disability.  Public and private service providers can not refuse to serve disabled people, nor can they give them an inferior service or charge them more.  Employers and service providers must make reasonable adjustments to the workplace to overcome barriers disabled people experience.  The disabled person should not have to pay for the adjustments, but the adjustment must be reasonable.  What counts as reasonable varies depending on the size of the organisation, the costs of the changes, how much the change would really  help you and other disabled people and how practical the changes are.

Ableism is also harassment of a disabled person.  Behaviour that is upsetting towards you and often continuous could be considered harassment.  Upsetting behaviour could include jokes about your disability, teasing or even illegal things that could be called a hate crime.  A lot of hate crime is violent and very nasty.  Some harassment can be online via social media or in the form of text messages.

Social Prejudice is a form of ableism, by prejudging disabled people or forming an opinion about them or their condition before being fully aware of all the facts.  Prejudice can lead to stereotyping, which according to Merrian-Webster.com is to ‘believe unfairly that all people or things with a particular characteristic are the same’.  For example assuming someone with a learning difficulty can not live independently or someone with a mental health condition would be a danger to themselves and to others.  Stereotyping disability is not good because most disabilities can vary a lot, even for people with the same condition.

Social Prejudice can hold a disabled person back from being able to join in fully with society, not because they can’t or do not want to, but because society will not let them.  Sometimes disabled people struggle to get a job as the employer assumes they may be slower at the job, or will be off work more either sick or having hospital appointments.  Some disabled people find joining a club or society hard as the club leader may assume the person can’t join in most of the activities or that the person would struggle to fit in with the group.

Social Prejudice often stems from lack of knowledge or experience of spending any time with a disabled person and only having seen disability as depicted by the media and from what other people have told them.  Sometimes the media makes out that disabled people are either tragic and need sympathy or that they are getting a free ride from government benefits.  Some social prejudices could be argued to stem from the fear some people have of becoming disabled themselves and not wishing to be reminded of that fear every time they see a disabled person.

My advice to help people understand the needs of a disabled people better is to talk to them.  An employer should ask a disabled person at interview about the disability the person has if they are worried about how the disability would affect their work, then they would find out that in a lot of cases it would have very little effect on the work if any.  You could try some volunteer work with disabled people as that can be very enlightening to show how much a disabled person can do.

I think  the word Ableism should be used more.  Giving things a label does seem to help some people understand what they are doing is wrong.  If we could say ‘that is such an ableist thing to say’ or ‘that person was very ableist’ it might at least start to help society become more disability discrimination aware.

To find out more about how the Equality Act effects you as en employer, employee or service provider the Citizens Advice Bureau have an online guide at Adviceguide: Disability discrimination

For a more in-depth guide to the Equality Act the government publish a full guide at Equality Act 2010: guidance

 

 

 

Post Surgery

Am I still disabled?  Since having reached full recovery from total hip replacement surgery this is a question I find myself asking.

Before surgery I always thought of myself as disabled.  No I was not fully wheelchair bound, but I could not walk long distances easily and I often found walking a painful experience.  Now I can walk further than ever pain-free.  I love how much more I can now do without having to think about it first and decide if I need my wheelchair with me or not.  However having spent my life calling myself disabled I find myself in a confusing situation.

I am currently trying to get a job.  When filling in an application form they often ask the question ‘do you consider yourself to have a disability?’  I now answer this with a no, as I do not see myself as having anything an employer would need to know about and do not need any work place adjustments.  However sometimes I feel a bit like I am denying a part of myself in saying I am not disabled. Having called myself disabled most of my life I saw it as part of my identity, part of what made me.  I went to a special school for disabled children for three years of my education and I attended a special needs youth club session in my teens.  Some of my closest friends are disabled.  At university I was part of the disabled students group within the student union.  My disability had helped me make friends and join a social setting within society.

Now I feel a bit lost, where do I fit in?  Officially I am not classed as disabled.  One year after my surgery they stopped my Disability Living Allowance benefit money as my hip surgery was so successful.  I agree with the decision, I no longer need to pay for taxis to places that are considered normal walking distance for most people and I was only on low rate anyway.  This also means I no longer qualify for a free bus pass now, which I have to say as a non-driver I do miss, but I understand why.

I made a comment on Facebook about not being disabled any more.  A friend of mine commented asking how could someone go from disabled to not disabled.  I tried to explain that in my case surgery had worked and I was no longer getting any disability benefit.  I still think she struggles to understand this concept, as do I in some ways.  Looking back it was probably not a good comment to have made when I have so many disabled friends on my Facebook.  It was tactless when most of them had conditions that no amount of surgery could ever fully cure and they would always be disabled.  I find it hard sometimes to know the right things to my friends without sounding like I am showing off or thinking I am better than them.  I honestly do not think I am better than anyone else at all.

I do still have some mental health issues and some learning problems.  I am unsure as to whether they class me as disabled or not as they are mild and not a huge problem all the time.  However they do at times make me feel like I have something in common with disabled people in that I am held back from getting on with my life in some ways.

More recently I have started to wonder if no longer being disabled I have actually made things worse in terms of getting on with my life.  I have seen friends from school and other places moving on in life with jobs, homes and financial support.  I am not saying these people do not need the help or deserve it, I am very happy for them.  However it leaves me thinking, what about me?  I am still living with my parents at home, unemployed and Job Seekers Allowance being my only income.  If I was still disabled would I have had help to leave home and get my own flat, or would I have been put on a work trial that led to a job offer?  I went from being disabled with extra support, to nothing almost over night, which was a bit scary.  I remember how much pain I was in before the surgery and am very glad I had it, but no one told me that you suddenly have to deal with everything in life by yourself.  I am lucky in that I have very supportive parents who let me live at home at the age of 28 and help me to prepare and get to job interviews, help me financially by only charging me a small amount of rent and help me to have some kind of life.  I wonder how some people cope post surgery when the official support dries up and they have no one at home to help them.

Right now life has reached a sort of limbo, like I am waiting for the next part of my life to start, but I do not know how to get things going.  I want to move out of my parents house, but that is unlikely to happen any time soon on my budget.  I looked at the idea of local housing authority flats, but seeing as my parents are willing to put up with me and I have no health issues stopping me from living at home I would never be eligible.  Before surgery I would have been as we have steep steps to our front and back doors and I could have claimed getting in and out of the house was too painful.  I have tried the job thing, but after nearly two years on Job Seekers the best I could managed was a three-month Christmas temp job and am back where I was before.  I do not get work placements that can lead to a job as I am not considered in need in that kind of help being a non-disabled job seeker.  However I do get to walk pain-free and my life has improved vastly since the surgery.  I now just need to figure out how to make the most of this new hip and to start living life to the full.