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Disabling Attitudes

The reaction I get when someone realises I am disabled is usually one of three

The patronising sympathy attitude

Recently in a café a man came up to me and said I was doing really well. He asked if I had spina bifida, which was rather a personal thing to ask, none of his business and wrong. I explained I had a hip replacement. He then went on to tell me he used to work in a special school with people like me and I was doing really well. I know he meant well, but I found it annoying. Firstly ‘people like me’ just labels me as special needs and does not give me any credit as an individual person. Secondly how does he know I am doing really well? I was in a café with my mum, nothing remarkable in that. What is a disabled person supposed to do? Either I carry on with life like everyone else or roll over and die. I guess I could sit at home all day, everyday and get very depressed and lonely, lamenting woe is me I am disabled or I could go out and have some kind of a life. Also being disabled physically does not make me stupid. The man in the café may have thought I was doing well to be so functioning. Well I chose my own drink, ordered it and paid for it, and do this kind of thing on a regular basis. In fact I live alone and do not have a carer.

The fact he used to work in a special school with that kind of attitude annoyed, but did not surprise me. I spent three years in a special needs school as a teenager and this was something that annoyed me on an almost daily basis, the patronising attitude of some of the staff. I think I may have acted up a little bit less perhaps if the staff had expected more of me. Thankfully my parents were never patronising and never let me use my disability as an excuse to not make an effort or learn things. I can do a lot more for myself now thanks to my parents making me learn than I may have been able to do otherwise had it been left up to school.

The super human Paralympics attitude

I watched the Paralympics opening ceremony earlier this month. I like the Paralympics; they are fun and help promote disabled issues around the world. On phrase I dislike that was also used a lot in the 2012 Paralympics, that disabled athletes are ‘superhuman’. I admit that they achieve some incredible things, but why are they superhuman? Disabled people are only joining in sport like everyone else. Sport for some people seems to be something natural, an instinct, why is it so amazing that a disabled person would also have this? Yes it is often harder for a disabled person to be able to join a sport, but it can be tricky for anyone to join sports, especially at an Olympic level. Sometimes the Paralympics can make it harder for the disabled with people thinking that if the Paralympians can achieve so much why can’t all disabled people. For example someone once said to me that if the disabled athletes can do that, why I can not even get a job. When it comes to work my physical issues are the least of my problems, like all disabled people I have more going on in my life than just my disability. Every four years it is like we are all suddenly expected to be superhuman. Well I will win a Paralympic medal the day all my non-disabled friends win an Olympic medal. Rob Crosan in the Telegraph puts it well, ‘The Chances of most disabled people becoming a world class athlete is roughly the same as it is for able-bodied people (i.e. nil).’

The scrounger on benefits attitude

I would love to have a paying job and not be on benefits, but that does not seem to be an option for me right now. There is only a brief three month period of my life I can remember being totally off any benefits as an a adult when I had part time temp job. I was on job seekers allowance for a number of years before changing to employment support allowance for health reasons. At first on job seekers everyone seemed supportive, but the longer I remained on it the more the support seemed to decline. People who understood my situation less well started to say not very nice things. Apparently I was lazy, not trying hard enough or too fussy about the type of work I would do. If only they knew how hard I was trying to get work, attending interview after interview and getting rejected over and over. I ended up having to remove a couple of people who I thought were friends from social media for saying very negative things about people on benefits.

The media do not help with the scrounger attitude some people have. There are so many newspaper articles about benefits cheats that it must seem to some that the vast majority cheat the system. For example if you type the words disabled or disability into an internet news search, you nearly always get at least one article on someone who has been caught cheating benefits. Yes, a few people do lie and claim benefits falsely, but the vast majority do not. ‘Official data shows that there is nearly twice as much error as fraud in the benefits system’ (www.disabilityrightsuk.org). Less than one percent of people are benefits are said to be fraudulently claiming. The media often muddle up fraud statistics with system errors making the fraud look much worse than it actually is. The government have also made things worse by constantly banging on about cutting disability benefits and catching benefit cheats. However if I was to come off ESA I would have no income coming in at all apart from housing benefit which gets paid straight to my housing association anyway.

I am not a scrounger; I volunteer a lot in my local community. I am not super human, I am rubbish at sport, but I also do not want your sympathy. I am simply me, a human being, but as Penny Pepper writes in the Guardian, ‘It truly seems that the only acceptable disabled person is a Paralympian – and then only for a few weeks’. All disabled people just want to be accepted as themselves and not just during the Paralympics, but all of the time.

References:

Rob Crosan, Telegraph, 15.09.2016
http://www.telegraph.co.uk/men/the-filter/we-disabled-people-arent-super-in-any-way-i-couldnt-care-less-ab/

15.05.2014
http://www.disabilityrightsuk.org/news/2014/may/benefits-fraud-less-one-cent

Penny Pepper, the Guardian, 06.09.2016
https://www.theguardian.com/commentisfree/2016/sep/06/paralympians-superhumans-disabled-people

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How many people does it take to change a light bulb if one of them has a disability?

I came across this joke on Facebook posted in a disability group that I subscribe to on my news feed.  As well as somewhat amusing, I find this to be quite an accurate description of what it is like to be disabled, at least in my experience.

How many people does it take to change a light bulb if one of them has a disability?
Ten
One to tell the disabled person how brave and inspirational they are for trying to change a light bulb
One to ask the disabled person why they can’t work 8 hours a day 5 days a week if they can change a light bulb every few weeks
One to tell the disabled person that they really should not be trying to change a light bulb… you know… with their condition and all
One to send the disabled person an article about how someone with a completely different disability managed to change a light bulb
One to insist on helping the disabled person change the light bulb and get offended and assume it’s personal when they don’t accept the help
One to tell the disabled person that changing a light bulb really isn’t that hard and if they just thought positively and stopped being lazy, they could do it without help
One to ask the disabled person if they’re really disabled if they can manage to change a light bulb
One to send the disabled person a life hack on how to change light bulbs more easily that does not really help disabled people
One to tell a story about how their aunt’s boyfriend’s sister with the same disability changed a light bulb once
And the disabled person to change the flipping light bulb

This is why I find it so accurate:

One to tell the disabled person how brave and inspirational they are for trying to change a light bulb

This is one of my pet hates.  If most people did something as every day as change a light bulb no one could care less, they would not bat an eye lid, but suddenly someone with a disability does it and it becomes a very brave and inspirational thing to do.  I can see why a disabled person could be an inspiration if they did something extraordinary like win a medal at an international sporting event or became a top scientist, but then a non disabled person could also be inspirational for these things.  I want to be an inspiration to someone for doing something noteworthy, not just for living my life.  For most disabled people it is either get on and do these things as everyone else does or just sit there and vegetate and die.  What is worse is that even charities and well-meaning people who work with the disabled go on about how brave and inspirational they all are.  As if each and every disabled person is amazing just for surviving.

One to ask the disabled person why they can’t work 8 hours a day 5 days a week if they can change a light bulb every few weeks

Firstly a lot of disabled people want to work and would if they could get an employer to take them seriously.  If they have taken time off work for their illness or disability an employer may think they will not be a reliable member of the work force and could have too many sick days.  Ignorance is one reason a lot of disabled people do not work.  Secondly the day the disabled person changes the light bulb they may be having a good day, more or less pain-free and able to walk.  They may have waited days or weeks to change the bulb, being in far too much pain to do it any sooner.  Since a lot of disabled people’s conditions fluctuate and they may have more bad days than good it would be very hard for them to work a steady job.  Thirdly some disabled people can change a light bulb, but that will be the only thing they can do that day.  One simple task might leave some disabled people too tired or in pain to do anything else for some hours after, whether that is due to the strong medication they are on making them tired or the disability leaving them in pain if they do much.

One to tell the disabled person that they really should not be trying to change a light bulb… you know… with their condition and all

A lot of disabled people know more about their condition than some GPs.  If you have lived with a condition a long time chances are you have done a lot of reading up on it and listened to a lot of medical people tell you things about it.  So you should know if doing certain tasks are bad for your condition or not.  Then there is the fact that the disabled person has probably lived with the condition for quite some time and knows which tasks they are capable of doing safely and which they should avoid.

One to send the disabled person an article about how someone with a completely different disability managed to change a light bulb

Some people seem to think all disabilities are alike and that if one person with a disability can do something then every other disabled person should be able to do it.  Of course this is not true, every single disabled person is an individual and even people with the same condition can’t all do the same things.

One to insist on helping the disabled person change the light bulb and get offended and assume it’s personal when they don’t accept the help

If a disabled person politely turns down an offer of help, don’t take it personally, they just know they are perfectly capable of doing the task and in fact it might be quicker done alone.  Do not assume a disabled person needs help unless they ask or really look like they are struggling.  Think, would you at this point be offering the help if the person was not disabled?  If the answer is no, then most of the time you do not need to offer the help.

One to tell the disabled person that changing a light bulb really isn’t that hard and if they just thought positively and stopped being lazy, they could do it without help

Try telling that to a person fully wheelchair bound unable to reach the light to change the bulb.  The power of positive thought can do a lot of good, it can help with motivation and self-esteem, but there is very little it can do if you can’t reach the light in the first place!  It can also not do much if you have lost the use of your hands, say through arthritis.

One to ask the disabled person if they’re really disabled if they can manage to change a light bulb

Sometimes if people have not met many disabled people, they often form preconceptions of what it is to be disabled.  Not all disabled people will meet those preconceptions, in fact most of them probably won’t.  To be disabled does not always render the person totally incapable of doing simple everyday tasks.

One to send the disabled person a life hack on how to change light bulbs more easily that does not really help disabled people

After I looked up what a life hack even is, I realised it was those silly tips or tricks people send you about how to do something more efficiently, that usually ends up with me taking twice as long to do something than it would have done had I just done it the normal way.  Basically a life hack is yet more unwanted advice that ends up with me being more confused than I was in the first place.  Disabled people often find their own tricks to manage to do something the only way they physically can and don’t need advice they probably can’t use.

One to tell a story about how their aunt’s boyfriend’s sister with the same disability changed a light bulb once

So what if that person did change the light bulb, who flipping cares?

The Disabled and Other People

I am an avid user of Facebook, I have found it a great way to connect with other disabled people who have similar disabilities to mine.  I am a member of several groups and pages for various disability issues.  I find that it helps to have a place to share our thoughts and issues regarding our conditions.  Often we ask each other questions that only others in the same kind of situation will understand  or be able to answer.  It can be very handy for example to ask a group of people who have already had the same surgery you are about to undergo what things we might need to consider taking with us to the hospital or to have ready at home for afterwards.

Whilst I am on these groups I see a fair number of posts about the way disabled people are treated by others.  Some posts are just people using the group as a place to vent and then move on from the situation.  Some people are trying to raise awareness and see if it has happened to anyone else.  Sometimes we even come up with ideas to help deal with some situations.  I decided to try to find out what annoys the disabled most about other people’s attitudes towards them.  Then I hope we can help raise awareness of these things and show the public how we would in fact like to be treated.  The results were interesting and varied.

Question: When it comes to being disabled in any way, what annoys you most about other people’s attitude to you or your disability?

  • They think that if you don’t look disabled or ill then you must be faking it.

You can’t always see signs of disability in a disabled person.  I had a bad hip and sometimes I used a walking stick and then people knew I had mobility issues, but during periods when I did not need the stick people would often not believe me about my hip hurting or not being able to walk very far.  Someone asked me once if I fake it for attention and some people seem to think you would fake it to get a disabled parking badge or benefits.  These people are very annoying.

  • When they pass judgement on you without bothering  to check for facts.  Like parking in a handicap space and having people giving you filthy looks because you are not old or decrepit, so you obviously have no need of the space, regardless of the fact you can’t walk far!

There seems to be a certain type of older person who think that just being older gives them more rights to things than the rest of us.  The ‘I’ve worked hard all my life and paid my taxes, so I deserve this hand out’ brigade.  Being old does not automatically mean you can have a disabled parking badge or certain benefits.  If you can not walk far without severe pain regardless of age you can claim a blue badge.

  • When someone takes something out of my hands and says they’ll do it for you.  If I wanted help I am capable of asking.

Just because a person has mobility issues does not mean their arms and hands do not work.  A person who has a missing arm can still use the other arm and their legs.  It is kind of insulting to have people automatically assume you can’t do something as if you must be brain dead as well as unable to walk or whatever it is.

  • It’s annoying when people say they understand as they had a sore leg the other day.  Not really the same scale of pain.

When I explain my hip issue to some people they say how they once broke their leg and know what I mean.  A broken leg can heal, a hip that grows undersized and deformed and has not regrown by adulthood into the right shape will never mend.  They did not end up needing a whole new body part like I did.  The pain before my replacement was every single day only varying from painfully sore, but I can walk, to so painful I can not move.  Unless you have had chronic pain you have no idea what it is like knowing that the pain is not going to end any time soon.

  • Patronised, being told I am brave.  (I am not brave, I am just living my life like everyone else, no one has a pain or stress free life.)  Or worse, ‘It must be nice for you to get out’.

If you are born disabled you have only ever lived that way so it is not brave it is just living.  If you have an accident is it brave to want to carry on living?  No, it is a natural human instinct to carry on living.  As for being nice to get out, well depends, maybe it was not nice to get out as you were feeling lazy that day or tired or hate the place you are going, just like everyone else.

  • Once you need to use a wheelchair you become invisible.

People start talking to your carer rather than you or fail to even notice you are there.

  • Ignoring me when in town with hubby.  Then asking him how is Debbie doing.  Hello, I’m here ask me.

Unless the disability specificity affects the voice, most disabled people can speak perfectly well and in fully formed sentences too!

  • People moving or pushing my chair without asking.  You don’t grab an able-bodied person and move them, why do that to me?

‘I am just going to move you over here out of the way’ says the woman in the cafe to my friend in her chair.  Err maybe she does not want to sit right in the corner pushed up against the wall.  If she was in the way of the queue or another table, if the woman had asked her politely if she would not mind moving and explained the situation I am sure she would have moved as she is sensible and kind like that.  That way she could pick her own spot to move into and keep her dignity.  If a chair has self-propelling big wheels, there is usually a reason, as they are perfectly capable of moving themselves.

  • That I can’t be a single mum and disabled.

Alison Lapper the disabled artist is a good example of how you can be both a single mum and disabled.  She is clearly a wonderful mother to her son, despite having no arms and truncated legs, as shown on the BBC’s Child of Our Time.

  • Because of bad media coverage on benefit cheats the constant need to justify my disability to strangers and authorities.

Having to constantly prove that you are disabled enough to warrant your disability benefits or disabled parking badge can get very wearing.  A person does not get given these things very easily, it takes considerable effort and time to get benefits, sometimes having to go to medical assessments miles from home.  A very few people do somehow manage to cheat the system, but the other 99% of people on disability benefit are genuine.  These few people are very annoying as they make the genuinely disabled or sick look bad and the fact that the press make a huge deal out of benefit cheats does not help.

  • Being told I can’t be in that much pain as you are smiling.

When in loads of pain every single day you try to find ways to distract yourself from the pain and the fact that you are smiling for all of ten seconds does not mean the pain has gone away, it means you just for a few seconds managed to not think about it quite so much.  Also some smiles might be fake to please other people in a certain situation, but inside the person still feels lousy.

  • When people say well done to us for doing everyday things.

Wow I managed to read a book that won the Man Booker prize and was considered a reasonably hard read!  Could the classroom support worker have been any more patronising at college?  I love to read and have done from a young age.  Having a learning disability does not necessarily mean I can not read and write.  Unless you know the disabled person has managed to do something they have been struggling with for a very long time, it is best not to praise them like you might a dog or a small child.

  • As a job seeker the law says not to discriminate however I get the impression that potential employers see me as a liability.

You can’t prove the employer did not hire you due to your disability, they will come up with some other reason if questioned, but sometimes it is obvious what they are really thinking.  They ask you how you would manage certain tasks and start to question your health during the interview.

  • When someone says ‘well you look OK to me, stop making a fuss’.

Most disabled people only make a fuss when they feel they are not getting fair treatment or really, really need help with something.  Most of us are not attention seeking.  As stated before not all disability or illness is obviously visible.

  • I have been turned away on public transport as buggies are using the disabled spaces.  One bus driver refused to lower the ramp as he could not be bothered.

A child can be more easily lifted out of a buggy than a full-grown disabled adult from a wheelchair.  By law buses have to provide disabled spaces and they can only let the space be used by buggies if there are no disabled people wanting to use them.  Parents who refuse to fold the buggy and make space are just down right rude.  Not lowering the ramp is denying a disabled person access to services which is illegal.

  • No disabled toilets in eating establishments and those with steps to them.

How little brain power do you have to make a disabled toilet with a step up to it?!  Well I have seen this done more than once, idiots.  Restaurants and cafes that seat over a certain number of people have to have toilets and they have to make reasonable adjustments so that disabled people have access to a toilet.  If they do not have disabled toilets they could be breaking the law.  What also annoys me is disabled toilets being used for storage or blocked so you can not use them.

  • It’s the tuts that get to me more than anything.

Tuts as if a disabled person should not be there and should be hidden away out of sight, how old-fashioned is that view!  Or the tut that says this is typical of a disabled person, making a fuss, when all they want is the same access to something as everyone else.

  • I remember someone telling me I was lucky to have a mobility scooter as it meant I did not have to walk anywhere.

I doubt the person chose not to be able to walk far.  I also bet they had to pay for the scooter themselves, and I do not call having to fork out hundreds or thousands of pounds just to be able to cope with a trip to town lucky.

  • People who say you are too young for a total hip replacement.

How do they know, have they had any medical training?  If a surgeon has agreed to the operation I can’t be too young, it is kind of obvious.

The answers of-course relate to the groups the question was asked in.  The group with the largest number of responses was Want my space? Take my disability!   The group campaign against the misuse of disabled parking spaces and blue badges for the disabled.  So quite a few of their answers related to parking and transport issues.

I also got a fair number of responses from Perthes Disease in Adults, a page I run myself.  This page relates to the hip condition I had as a child and is about what happens later in life when we grow up, but still have hip pain.  So the answers from them were often mobility and hip surgery related.  I also asked the question on my own wall as I have a few disabled friends and got a couple of responses.

 

Some Disability Myths Dispelled

There are a lot of myths I hear about disability and people who are disabled.  I would like to dispel some of those myths and explain how I see things from my point of view as a disabled person.

All disabled people are sick or even dying

This is not true for all disabled people.   Some are born the way they are and the condition will never get worse from some sickness.  Some are sick, but are far from dying, well no more than the rest of us are dying.  My condition did get worse over time, my hip got more and more arthritic, but arthritis in my left hip was never going to kill me. The use of wheelchairs in hospitals for sick people may have contributed to the way  people view someone as being sick if they use a wheelchair.

Someone in a wheelchair can’t walk at all

There are many reasons a person may use a wheelchair and not being able to walk in any way at all is actually quite rare.  Mostly people who are disabled use them when they go out as they can not manage to walk very far before they experience pain or exhaustion.  In my case I could walk short distances and mostly went out without my chair if I knew I would not be walking all that far or I could break up the walk with plenty of rest stops on benches.  Some days I could actually walk further and rest less, but on bad days I could not walk very far at all.  I used a wheelchair for longer distances as crutches could often get tiring or hurt my hands after a while.  Another reason people use wheelchairs may be that they can walk, but only very slowly and they need the chair to help them keep up with their friends and family when out.  It might be that the person is only using a chair for a short time due to being weak after surgery or an illness or whilst a broken bone heals.

Disabled people are brave and inspirational

Well this might be true for some disabled people, such as say Steven Hawking, but only to other scientists and people who aspire to work in science and it has nothing to do with him as a disabled person.  If I inspire people that is great, but I doubt I do, unless people aspire to be still jobless and living with their parents aged twenty-eight.  I do not see myself as brave at all, I am wimp when it comes to an awful lot of things, in fact sometimes I was too afraid to try things in case it hurt my hip.  Disability requires adapting to a lifestyle, not bravery.

Disabled people need pity

While I do not see myself as especially brave, I also do not see myself as someone to be pitied.  Disability is often seen as a tragic unending burden.  OK so many disabled people need extra help with things, but everyone needs help sometimes.  Pity is not the same as understanding and sympathy, which just shows you are being thoughtful.  Where as pity as this disabled person puts it  ‘is generally a reminder that somebody else thinks you’re screwed,’ (Disabled Don’t Want Pity).

Disabled people only want to hang out with other disabled people

This assumes that disabled people are all a one-dimensional group, all having exactly the same interests.  I have a range of friends both disabled and non disabled.  I do not automatically get along with every other disabled person, that would be like every green-eyed person getting along just because they have the same eye colour.  My disability means I may have some things in common with some other disabled people meaning we can bond somewhat, but I do not have things in common with every disabled person.

Disabled people don’t have sex

It is sometimes assumed that disabled people are not interested in or simply can’t have sex.  Well in some cases sex maybe more physically limited in the number of positions they can use, there is normally at least one way they can manage sex quite comfortably.  People with learning disabilities are sometimes assumed to never understand or think about sex, but as with everyone else the ranges in sex drive varies.   As Terri Couwenhoven of Woodbine House publishers of books about special needs points out, ‘the initiation of puberty is not dependent on social or emotional maturity or many of us would never have matured!’ (Woodbine house) Which makes the case that all children need sex education of some kind no matter what type of disability they have, be it physical or learning based.

Curious children should not ask a disabled person about  their disability

Children tend to give into their natural curiosity more than adults, which in this case in a good thing.  When they ask a disabled person about them being different it is obvious they do not mean them any harm.  I think if we educate them young about disabilities and expose children to disabled people they will grow up to be less negative and ignorant about disability.  Parents sometimes tell children it is wrong to ask a disabled person about their condition, but if a child gets told off they may see disability as something bad, that all disabled people are to be avoided.

Having a type of learning disability means you are stupid

No, it just means your brain processes information in a different way.  You still have the ability to learn.  I have dyscalculia which means that I am bad at maths, I can’t calculate sums in my head very well, I am rubbish at directions and can’t judge distances very well.  It is like my mind is made up of filing cabinets and the maths draw got stuck, it will open a tiny bit to reach in and pull out the very beginnings of something, but I can’t seem to reach the files further back.  However my English file for reading and writing fully opens, as do most of my other files.  Having trouble in one area does not mean you have it in all areas.  However some times at school it seemed to feel like people thought you must be all round stupid if you have any type of learning problem, then when you said something intelligent they look at you with a sense of shock or assume you must be wrong.  Most people with learning disabilities are good at other things, hardly anyone is good at everything.

People with Learning Disabilities are just lazy

I have heard it said more than once that a learning disability is just an excuse to not put in any effort and to be lazy.  In most cases this is simply not true, I did try very hard at my maths for years, but it was very hard to be motivated by a teacher who called you lazy.  OK, so yes sometimes people with learning disabilities can use it as an excuse to put in less effort than they should, but it does not mean this is the case all the time.

All mentally ill people are violent or unpredictable

Most are no more violent than anyone else.  In fact people with mental health issues are more likely to be victims of violence than perpetrators.  When violence does occur it is mostly for the same reasons as it is with everyone else, either they feel threatened or had excesses use of drugs or alcohol.

People with disabilities are only able do simple, repetitive work

As with everyone else people with disabilities have a range of skills to offer, which differ from person to person.  If you stuck me in a factory job that was exactly the same simple task every single day for hours at a time, I would probably end up having some kind of break down from the shear boredom.  I do not mind work that is mostly the same each day, but at least give me some interaction with other people or something that makes me use my brain somewhat.

Disabled people need protecting from failing

Disabled people have a right to experience a full range of human emotions including disappointment and failure.  No one likes to fail, but sometimes it is the bad times that make us stronger and make the good times better.  Often it seems to  come from people thinking that a disabled person has enough of a burden to deal with and they could not cope if they failed.  However never letting a child fail because they are disabled may in fact just set them up for a much  bigger failure when they grow up and realise the world outside of home or school won’t protect them from it.

Are there any other disability myths you sometimes come across?  It would be interesting to hear how other disabled people react when someone makes a wrong assumption about them as a disabled person.

 

Disabled people are not all one homogenised group we are individuals

Disabled people are not all one homogenised group, we are individuals

Crippen, Disability Cartoons

 

 

 

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