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I recently heard a radio programme that was very moving and very interesting.  It illustrates my views on the disabled very well and goes with some of my blog posts so I thought I would share it.  It is about a child who is able to communicate only by using an alphabet board using his eyes, but boy does he communicate.  He and his parents are now campaigning for special needs education to be more meaningful and actually teach the children.  As the child himself puts it speical needs education was like ‘high end baby sitting’ for him and I can relate in some respects to that.  I found the programme inspiring, showing that you should make use of the skills you do have and not to worry about what you can’t do.  I would highly recommend people to listen to it.  Please copy and paste the link to listen.  (Sorry if you are aborad and the show will not play).

http://www.bbc.co.uk/programmes/b07zxnh5 Hardeep’s Sunday Lunch series 5 ‘Song of Voice’

 

 

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

A little consideration for the disabled goes a long way

When you are disabled life already gives you a plenty of challenges and problems, the last thing disabled people need is others making life even more tricky.  These issues may seem trivial to some, but to the disabled they affect they are very important.

 

Misusing a disabled parking badge

A blue badge is issued to disabled people who can not walk far or find it painful.  However some people seem to think that it is issued to the vehicle not the person, so feel free to use it when the disabled person is not even with them, but this is actually illegal.  The idea is that the disabled person can take the badge with them in any vehicle they get a lift in, not that the entire family can use it.  The other excuse disabled people have pointed out in a Facebook group for disabled parking badge abuse is when a carer says they are shopping on behalf of the disabled person.  If the disabled person is not with them, they can not use the badge and it makes no difference why they are shopping.  Also the disabled person does not just have to be in the car, but getting out and going somewhere.  The badge is to help disabled people get out more, not to sit back and watch others have the life for them.

 

Using a disabled parking space without having a blue badge

Then there are those who use disabled spaces without even having a badge at all.  There are only a few disabled spaces in a car park and if they are all taken up it can prevent a disabled person from being able to park and they could miss out on doing what they wanted.  The excuse, ‘I am only going to be a minuet’ is not valid, what you are doing could end up taking longer than intended or just happen to be the  minuet a disabled person arrives.

 

Parking in front of a drop down curb or on the pavement

Drop down curbs on pavements are put in to help people cross the road.  Whilst most people could walk around a car parked in front of a drop down curb, a lot of disabled people can not.  The disabled person would have to go back to the last drop down curb, which could be a very long way back and in some cases there is only one drop down curb on and off the entire pavement.  On the road where I live there seems to be a lot of parking half on the pavement, with no room at all to get past the car unless you walk onto the road, which is not only unsafe, but impossible for some.  I do realise that sometimes there is not much parking space and it is the only option, but even so I often see cases when the car could have been parked with more space left on the pavement to get past.

 

Businesses using disabled toilets for storage or blocking access

If a disabled person can not use the toilet whilst they are in a restaurant, café or place of business they are highly unlikely to give the place repeat custom and may have to leave early and go elsewhere.  I have come across disabled toilets used to store cleaning equipment and empty bar kegs.  Whilst I could still get to the toilet, I doubt that some people with large wheelchairs or walking frames could have.  A person in a wheelchair may need turning space, which can be tricky if there is other stuff in the way.  Even worse is when you can not even get to the disabled toilet because access is blocked.  I was once seated in a pub restaurant at a table right in front of the disabled toilet.  For someone to use the toilet we would have had to shift the table to the side and stand up and wait.  They had crammed far too many tables into the place anyway and it just made for a loud, unpleasant atmosphere.

 

Poorly designed disabled toilets

A good disabled toilet design should take into account the fact that not all users will be wheelchair bound and that not all wheelchair users are in the same situation.  I used to use crutches and the disabled toilet was easier as it had more space for them and after my hip replacement I found rails helpful to sit down and get up again.  However the sink in a disabled toilet is often lower than normal with the thinking that wheelchair users are lower down, while this is often true, for those who use other walking aids this is actually not helpful as bending can be tricky.  The best solution I have seen to this is in some Costa Coffee branches that have both a sink at average height and another one at a slightly lower height.  Although in one branch the soap dispenser was only reachable for the higher sink user and for those who could not reach up they would have had to go without.  Another problem is when the toilet is too small for the user to turnaround in a wheelchair, forcing them to reverse out which can make opening the door tricky and has the risk of bumping into someone.  Plus some disabled people need to go with someone for help and this is tricky if the toilet is small.  Quite often the baby changing facilities are put in the disabled toilet, which I can understand as it has more room, but if the changing table does not fold against the wall it can just get in the way.

 

Shops that cram in too many rails or display units

As the expression goes ‘pile them high, sell them cheep’.  I do love those bargain discount stores, but they do like to pile things to the point there is not much floor space left.  If I have trouble walking through some of them without a walking aid; imagine trying to get through in a wheelchair.  Cheep clothing stores often cram in so many clothing rails there is not room to get a wheelchair through or the chair knocks half the clothing off the rails as it goes.  Knocking things off can be embarrassing and bending down to pick them up can be tricky for some.  If you do not make a shop floor plan with the disabled in mind not only could you lose customers, but you could damage or dirty stock as disabled people try to get through.

 

Shops with heavy or awkward doors

A lot of disabled people rely on automatic doors.  Whilst some can get through pushing the door open using their wheelchair, if the door opens towards them this is not possible and it is not possible in either direction with crutches.  It is understandable that some smaller independent shops do not have automatic doors as they cost a lot to install, but bigger stores should have them.  If it is not possible to have automatic doors, using doors that are not too heavy or stiff will at least help some.

 

Poor disabled entrances to buildings

When the disabled entrance to a building is around the back or side it can be annoying.  Once on a college trip to a museum with several disabled people on the course we had to enter through a side door.  The door took a while to find as it was rather hidden, then we had to ring a bell and wait for someone to come and let us in, which seemed to take several minuets.  We had to go through a fairly dark corridor somewhere in the museum that was clearly not generally public access and then we came out in the middle of the museum no where near the main entrance, which if you wanted to go to reception left you with something of a trek.  It felt somewhat like using the servants’ entrance to a grand house, rather embarrassing.  I understand that sometimes it can be very costly to change a building entrance and some listed buildings may not allow any change.  However when possible it is always best to make the main entrance assessable to all.  The best idea is to put a ramp to the side of the main steps.  I have also seen a small lift solution used when it is not possible to have a ramp.  If you can not make the main entrance wheelchair assessable at least add a rail so as many people as possible can use the steps.  Then have decent signage to the disabled entrance, or you could lose visitors or customers who give up on finding the way in.

 

Cafes with joined together tables and chairs

Mostly seen in the greasy spoon type cafés, these tables and chairs come as one joined together.  Climbing over the bar to sit down can be tricky for some, even if they can walk.  I used to find it hard myself due to a hip disability.  The seats cannot be moved for wheelchair users to pull up to the table, and although they can sit at a table end, two wheelchair users can not sit together at the same table if they wanted.

 

Benches left broken long term

Not all disabled people use wheelchairs; I used to use crutches or no walking aid at all before that.  However I could not walk very far before I got pain in my bad hip.  When having a day out I would need to sit down now and then to rest.  A lot of places have a good number of benches which really come in handy for this.  What annoys me though is when you see benches that are left broken for a long time.  I have been to places which have caution tape over a broken bench, then gone back weeks or even months later to find it still exactly the same.  If it is a busy place this can be annoying when all the other benches are taken up or the next bench is not that near by.  I have also seen when a bench is no longer able to be repaired, the remains taken away and the bench just not replaced at all.  I get annoyed when a bench has clearly been broken by vandals, they have no idea how much a simple bench can mean to some people, making the difference between a good or bad outing.

 

Most of these issues can be solved simply, often by just having some consideration for others.  For businesses thinking about disabled customers using your building could actually increase custom and make you more money.  A lot of these things also can affect people with pushchairs or the elderly, so just think how many people you would be helping if you made some simple changes to your life.

Over To You

Firstly I would like to thank everyone who takes the time to read my blog posts, I really appreciate it. I enjoy writing about my experiences as a person with both physical and mental health disability issues. It gives me a space to explore how I really feel about things, to research and share information and to let people know what is going on with my life. I am both surprised and delighted how many people are reading my blog and even following it.
Now I would like to ask all those that regularly read my blog, what you would like me to write about. Is there a topic or issue I have written about previously that you would like me to explore further or update you on? Is there a new topic you would particularly like to see a post about? Do you have any questions about anything I have written? I try to keep my blog disability related physical, mental or learning. Please let me know by commenting on this post. If I think it is a topic I have an opinion on, or could come up with something to say on it or think I could research and write about I will do my best to come up with a post for it.

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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.