Archive | May 2014

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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Facts about Perthes Disease

I was diagnosed with Perthes Disease or Legg-Calve-Perthes Disease aged seven and since then it has impacted on almost every aspect of my life.  Not many people know what Perthes Disease is or how it can affect the lives of those who have it, so I have put together a list of basic facts to guide people.

  • Perthes Disease affects the head of the femur (highest part of the thigh bone), which is the ball of the  hip.  Blood supply to the growth plate of the bone becomes limited.  Growth plates are the areas of developing tissues at the end of long bones in children and adolescents.  The growth plate regulates and helps determine the length and shape of the mature bone.  Due to lack of blood the bone at the ball of the hip softens and breaks down.
  • Regrowth of the blood vessels will occur over several months, and the blood supply will return to the hip bone.  New bone is laid down and the femoral head regrows.  It can take several years to regrow.  During regrowth the femoral head may be weakened to the point where it collapses leading to a deformed joint surface or even a complete flattening of the head which can lead to a permanent change in the shape of the hip.  In my case this led to a less than spherical shape inside a spherical socket.
Stages of flattening of the femoral head

Stages of flattening of the femoral head

  •   In the UK about one in every one thousand children get Perthes Disease.  It is most commonly seen between the ages of four and eight  years of age.  About four boys for every one girl are affected.  Roughly twelve percent of cases are bilateral, in both hips.  The younger the child when diagnosed the better the chances of a full recovery, especially under the age of five.
  • For younger children non-surgical treatment is often the preferred option.  Many children are put on crutches to become non or only semi weight baring to help with the pain.  Some are given wheelchairs to use for longer distances, but generally crutches are preferred as it keeps the other the muscles in the other leg strong.  In most cases the advice is to avoid heavy impact on the hip such as running or jumping.  Physical therapy is often used to help maintain a good range of motion within the hip.  The exercises tend to focus on hip abduction and rotation.  Hydrotherapy and swimming is highly recommended as non weight baring exercise that causes the hip less pain.  Traction is sometimes used when lack of motion in the hip has become more of a problem, although this is become a less common treatment.  A brace may be used in the most sever cases, with the brace keeping the leg slightly abducted, to keep the femoral head positioned well in the socket.  Anti-inflammatory medication such as ibuprofen are used to help regulate the pain in older children.
Scottish Rite Orthosis brace  The brace allows the child to walk and play while it holds the hip joint in the best position for containment.

Scottish Rite Orthosis brace
The brace allows the child to walk and play while it holds the hip joint in the best position for containment.

  • Surgical treatment is sometimes used on older children, generally preferred when over the age of six.  A tenotomy surgery or tendon release is used to release an atrophied muscle (a decreased muscle) that has shortened due to limping.  Once released a cast is applied to allow the muscle to regrow to a more natural length.  The cast is usually left on for six to eight weeks.  An osteotomy (cutting of the bone) surgery may be done to help realign the femoral head in a more protected position within the hip-joint socket.  Occasionally the osteotomy may be done above the hip socket so the hip socket can be repositioned to help the formal head have less chance of becoming deformed.
Varus femoral osteotomy uses a plate and screws to hold the hi in the correct position.  A wedge of bone is added to the acetabulum to restore hip stability.

Varus femoral osteotomy uses a plate and screws to hold the hip in the correct position. A wedge of bone is added to the acetabulum to restore hip stability.

 

  • A lot of Perthes patients end up with leg-length discrepancy, when one leg is longer than the other.  This can be caused due to the effected limb growing slower than the other leg and failing to catch up.  By the time I finished growing I had a one and half centimetre discrepancy.  This can cause a more server limp and a gait abnormality, changing the way someone walks.  This can cause posture issues including lower back pain.  Leg-length discrepancy can effect balance, for example I found it very hard to balance on a bike without stabilizers.
  • Perthes affects children during growth, once fully grown it is no longer Perthes, but it may  have left the hip damaged.  Perthes patients are at a higher than average risk of developing osteoarthritis in the hip, often at an earlier age than normal.  The more abnormal shape the hip grows back into the more at risk of osteoarthritis the patient is.  Older children who get Perthes are also more at risk.  Osteoarthritis can be extremely painful, making it painful  to bend over or even to walk.  If it gets very bad it can hurt almost all of the time including when at rest.  In the worst cases this can lead to the need for a total hip replacement, which I had aged twenty-five, being told I had degenerative early onset osteoarthritis.
  • Children who have Perthes at a younger age, usually under the age of six are often less at risk of developing problems with the hip in early adulthood, with the hip likely to grow back more rounded and correctly in the socket.
  • There is no clear reason why some children get Perthes Disease.  It is not due to an injury or blood vessel issue.  In some cases it does seem that Perthes runs in families, but there is no clear reason as to why.  However it often appears very randomly with no family history at all.
  • Legg-Calve-Perthes is named after three physicians who independently described the condition in 1910. There were American Arthur Legg, French man Jacques Calve and German Georg Perthes.
  •  Dogs also seem to get Perthes Disease, mostly seen in miniature, toy and terrier dogs.  They are usually about five to eight months in age when effected.  It effects the dogs hind legs.
  • In the UK The Perthes Association charity was set up in 1976.  It aims to aid research to find a treatment for Perthes Disease and hopefully a cure.  They help families with information and advice on the disease.  They can also loan equipment such as buggies and hand propelled trikes. http://www.perthes.org.uk/what-do-we-do/  In the USA Perthes Kids Foundation was started in 2007.  Its main aim is to raise global awareness of Perthes  Disease, further research into it to help find a cure and to help connect and support families effected by it.  Link to their Facebook page

There are other various treatments and issues regarding Perthes Disease that I have not covered, so if you are worried about your child and any hip issues they may have, please see your doctor.

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

 

 

 

Mental Health Issues

‘One in four people will experience some kind of mental health problem in the course of a year’ (The Office for National Statistics Psychiatric Morbidity report, 2001)

I have seen or heard this statistic more than once, but what does it mean?  What is a mental health problem?  So one in four British adults experience at least one diagnosable mental health problem in any one year, which sounds a bit alarming, but it is not always that bad.  Mental health problems can range from being at risk of self harm or hurting others to generally feeling low and  being irritable.

The most common mental health issues are mixed anxiety and depression with almost 9% of people meeting criteria for diagnosis.  I have suffered from this on and off since I was a teenager.  Anxiety is a fear, but it becomes a problem when you can not control it or you suffer long-term effects.  Anxiety for some can lead to panic attacks which can be very frightening as they can feel like you are about to black out or can’t breath.  I have never had a panic attack which I am very glad about.  However I often feel overly anxious about things, especially when something unexpected changes my immediate plans, such as if I am getting ready to go out and then there is a delay for some reason.  I can get irritable, cry or just give up and not even bother to finish what I was doing.  Anxiety can make my OCD much worse which then gives me even more to be anxious about.  I sometimes find I need reassurance from others that everything is OK and I become dependent on them.  Anxiety can be a vicious circle, feeling anxious about a situation that might make you anxious.  I have found myself avoiding situations that have triggered anxiety in the past, meaning I can miss out on things.  This can then lead to depression.

Clinical depression is more than just feeling a bit low or feeling somewhat sad for a short while.  For me it is an overwhelming feeling of sadness and negativity that I feel powerless to do anything about.  I have had periods when I felt so self doubtful that I could not see the point in anything and then just give up  trying to do things.  This includes even getting out of bed and dressing sometimes.  I have spent whole days in my pyjamas getting out of bed after one in the afternoon and doing very little apart from maybe watching television.  On these days I may hardly move or get any exercise, which is not good for my physical health let alone my mental health.  Depression can be triggered by many different things and sometimes can be caused by a combination of factors.  The first time I remember feeling full on depression was when I was in my early teens.  I had been badly bullied in school and was going through puberty both of which combined to make me very unhappy, then when I had a period of not going to school at all, I became depressed.  A lot of my depression flare ups seem to happen when my life reaches a stagnant point, such as between college courses or a few months after graduating university when I was left by a long-term boyfriend and struggling to find work.  It is not uncommon for the long-term unemployed to suffer depression, endless rejections and not hearing back from employers can make the future seem bleak.  Unemployed people, the long-term sick and poorer people are often effected for longer periods than most people when it comes to depression and other mental health issues.

Another issue I have problems with is Anger.  Everyone gets angry, it is a natural human response to certain situations, but excessive anger can be a problem.  Excessive anger can often be a sign of other mental  health problems, such as anxiety, alcohol or drug addiction or depression.  I used to get very angry in school and yell at teachers in front of everyone.  I still get angry now, but less often in public than I used to.  I tend to get angry when frustrated with myself or others.  My anxiety and depression can make me very angry sometimes, blaming everything and everyone around me.   I also get angry when I feel powerless, which maybe why I did it so much in school.  Anger is very scary for those around you and can damage relationships with people you love and care about.  Sometimes with my OCD I get angry and yell at inanimate objects, which is not only very pointless, but if other people see it can make you look insane.  I  find that anger often leads to depression, bursting into tears after a yelling session, with feelings of even more hopelessness and frustration, which means the anger session was pretty pointless.  The scariest times for me have been when I was so angry I threw things, such as a ruler at a teacher or when I lashed out and hit my mum.  Luckily for them and me I am a bad shot and missed and I am weak and fairly easy to grab and stop.  I never went this far very often and try hard not to, but sometimes I seem to lose myself in the heat of the moment.  I then feel guilty about it afterwards.

Over the years I have had various types of help for my mental health issues.  I have had Cognitive Behavioural Therapy more than once.  CBT combines talking therapies with behavioural therapy.  The therapy looks at how you feel about the things going on in your life and how this affects the way you behave.  Then you and your therapist try to break the patterns of negative thoughts and change the way you behave in negative situations.  I found CBT slightly more helpful the second time I had it as I was older and more ready to deal with the problems.  The first time I had it in my early teens, it helped a bit, but I am not sure I was mature enough to take it all on board properly.  I  had CBT mainly for my OCD and depression.  I had counselling which is a talking therapy.  A regular time and space to discuss problems and explore feelings.  It can help a lot, but you need to be open and honest with the counsellor.  I found that you might need to try more than one counsellor before you find the right one for you that you can open up with, but it is worth trying again with another one.  I had group therapy when I was about twelve, which I enjoyed for the main reason that it got me out of school when I was being bullied.  I think it helped me realise that I was not alone and that compared  to some I was not even that messed up, but it was not much help for actually dealing with my issues.  I found that during the breaks and afterwards the other children just encouraged each other in the negative and bad behaviour patterns.  Anger management therapy helped me somewhat, with one-to-one weekly sessions for several weeks. I had a combination of CBT and talking therapy to try to understand what made me angry and how to deal with it better.  I do think it helped me in some situations, but not with all of my anger.  I think therapy has been worth while as although  it has not cured my mental health issues, it has helped me to understand them better and to at least make a start in them being less of a problem.

With mental health issues I have found that mostly it is down to me, I have to want to change.  Before therapy, sometimes just helping yourself can be enough or at least a good start.  I find keeping active helps with depression and anxiety, if I am busy I have no time to  think about it.  Also doing something positive can make you feel that in fact life is more worth while, such as volunteer work or contributing in some way to someone else’s life.  Talking about how you feel with friends and family can help.  Not only will they hopefully understand what you are going through better, but I find talking about it helps me work out how I feel better.  I find keeping a daily diary helpful as it lets out my emotions without hurting anyone else’s feelings.  Keeping to a more healthy diet helps you bodies all over well-being as does not drinking too much.  I find if I drink too much it can just aggravate the mood I was already in making me more angry or more depressed.  Most of all you have to accept yourself, we are all different and good at different things.

If you would like to learn more about mental health or would like some advice I found these two websites very informative:

Mental Health Foundation http://www.mentalhealth.org.uk/

Mind http://www.mind.org.uk/

Mind also run ‘Elefriends’ a good website for sharing how you feel with other people suffering from mental health problems.  You can write or post whatever you want on the site and other people can comment on it and offer advice.  I find the people very non judgemental and often they understand exactly what you are going  through.  http://elefriends.org.uk/login?next=%2Fposts#_=_