Tag Archive | Disabled

Disabled Friendly Businesses

Many businesses open to the public could do more to make themselves disabled friendly.  Some seem to think it is OK to ignore disabled customers needs totally and some have made a good start, but could do better.  The disabled know that not every business can make themselves totally disabled friendly, some are restricted by the building they are in or by the nature of the business they do, what we are asking for is businesses to make adjustments where they can.  Many shops, cafes, pubs and other publically accessed buildings are actually missing out on what could be added income by not even considering the needs of disabled customers.  These are some of my suggestions to make businesses more disabled friendly. 

Ramps and hand rails

This may seem an obvious one, but some business have not even gone as far as making it possible for some people to get past the barrier of steps.  Some businesses cannot add a ramp permanently as they are a listed building or it would stick out too far onto the pavement, but they could often provide a portable ramp that can be put in place when needed.  Even if a business has a portable ramp, often it needs making clearer that they have one available and how to get it put out.  A sign needs to be put in the window that they have a ramp and how to get the staffs attention that it is required.  It is no good just having to yell in the hope they hear you through the door and down the other end of the shop or in a busy bar.  The best solution I have come across is a bell you can ring so that someone will come out and help.  Also if a ramp cannot be used, at least have hand rails that are in good condition at the side of the steps.  I have seen broken hand rails more than once or ones that just stop suddenly before the steps have ended, which is annoying. 

Heavy or difficult doors

After the barrier that is the steps, next comes the door.  Really heavy doors can be a problem for wheelchair users, those with any kind of walking aid and those with wrist or arm issues.  Not only is this an issue for the disabled, but those with pushchairs or heavy shopping.  Some doors can be so hard to open you think the business is closed when it is not.  Doors need to be kept well maintained if they are prone to swelling in damp weather and need to not be too heavy or stiff.  A good door handle is vital when not using automatic doors. 

Floor surfaces

Even the surface of the floor can be an issue in some places.  The floor needs to be kept smooth so a wheelchair can move across it.  Door mats and rugs need to be stuck down firmly so that people who find walking tricky or have walking aids do not get caught up in them, they can be trip hazards in some cases. 

Floor space

Some places have very little floor space which can be tricky for those in wheelchairs or on crutches needing space to manoeuvre.  Shops should avoid having items directly on the floor if possible.  Aisles should not be too close together, people need room to get up and down them without having to back a wheelchair up.  Cafes, restaurants and pubs often have their tables too close together, leaving no room for wheelchair uses to pull up to a table or for some people with walking aids, a tight squeeze can be near on impossible.

Lighting

Lighting is a very important factor in any business.  Places with really low lighting are frustrating to those with less than perfect eye sight.  Sure they are trying to create mood lighting, but when you struggle to see what you are doing it is just annoying.  Costa Coffee is one of the worst examples of this I have come across; almost all of them are pretty dark.  Then again lighting that is too bright can be painful on the eyes and can cause headaches, especially to those with sensory issues.  Flickering bulbs can cause problems for those with sensory issues as well, it is important to change bulbs that flicker promptly. 

Seating

Seating in a café, restaurant or pub needs to be comfortable to sit on for an extended period of time.  Too many pubs rely on stools for seating.  Whilst most people can sit on them for short periods, I have noticed not many people seem to find them comfortable for long.  Sofas and bucket style chairs seem popular in cafes these days, whilst these are fine for some people; they are often too low for me.  For those with back issues, hip or knee problems, chairs and sofas that you sink into can be hard to get on and off.  Too many places that serve food do not have chairs compatible to the height of the tables, which means you either end up with food in laps or setting off any back issues someone may have.  A range of different seating options is the best solution, but at least choose chairs at a sensible height with proper backs to them. 

Background music

Background music should be just that, in the background.  Some places have the music so loud that you cannot think what you are doing.  Those with sensory or concentration issues can find loud music so intrusive that they will just walk out again. 

Signs and menus  

Anywhere that serves food and drink needs to keep menus clear and easy to understand.  Some menus are too busy with so many visuals they are confusing.  Remember dyslexics and others who struggle with reading may find it tricky to understand a complex menu, keep the layout simple.  The same goes for signs, keep them simple with a clear font.

Helping customers

In a café or pub staff should help customers that are clearly struggling to carry a tray of food or drinks.  I have had staff just watch me struggle and if I drop it, they only make more work for themselves having to clear up the mess.  On the other hand in shops I have had over helpful staff who keep asking if I need help when I have clearly said no.  Some autistic people struggle with social interaction and this could be very off putting for them, especially if they are already struggling to concentrate in a public setting.  Staff should only ask once if someone needs help and should also not make me feel watched the entire time like I am some potential shop lifter, this has put me off some shops totally.

At the till

At the till it can take some people longer to pack their bags than others.  I would like to not feel rushed by the cashier as if I am being slow and do it on purpose.  When I was on crutches this was even worse as it could take me a while to put the crutches to one side, pack my rucksack, put it on my back and then get the crutches back on, but a few cashiers used to roll their eyes at me.  Other customers could also be more patient with someone on crutches or any kind of walking aid as shopping with them is not easy.  Also some people take longer when they have cognitive issues or even issues that can impair dexterity in their hands such as arthritis. 

Toilets

I have said this in previous blogs as it is one of my pet hates, badly designed or misused disabled toilets.  If possible a business should have a separate disabled toilet, disabled people can take longer than others and this helps free up the other toilets.  A lot of places also assume all disabled people are in wheelchairs and therefore put the mirrors really low, or quite often do not put any mirrors in at all, as if disabled people cannot possibly care about how they look.  Most importantly of all businesses should remember the disabled toilet does not double up as the cleaning cupboard!  There needs to enough space left for turning room for a wheelchair, but often the toilet is so cluttered that there is simply no room.

I hope this will start more of a debate around accessibility and give bsuiness owners more of an idea of disabled customers needs. Also I hope disabled people feel justifed in standing up for their rights as customers and start asking some places for better acsess.

Perthes Disease Frequently Asked Questions

These are some of the questions I get asked most on my Facebook page Adults with Perthes Disease and have come across on other Perthes related pages and groups.  I am answering them as best I can from the research I have done on Perthes over the years and on my experiences of having had it myself.  However I am not a medically trained expert in anyway and advise you listen to your doctor and medical team first and foremost.

Is pain down the leg normal?

Referred pain down the leg is common often to the knee or even feet. As a child I sometimes got shooting pains down the leg from my hip.  As an adult I get a dull ache down the leg possibly due to my bad walking style.  My feet turn out too much as did my knee before I had my hip replacement.  I have found orthotics (insoles inside my shoes) from podiatry helpful.  Mine have a slight slope on the heal to help turn my feet forward a little.

The non Perthes affected hip and leg sometimes hurt, should I be worried?

No, this is fairly common.  The good hip often has to compensate for the Perthes side by taking more of the body weight meaning the muscles sometimes become rather sore.  Perthes can affect both hips, known as bilateral Perthes, but this is quite rare, occurring in only about twelve percent of cases.  If the pain in the non Perthes hip occurs frequently and becomes really bad it is worth mentioning it to the doctor just in case to get it checked out.

How much should my child be non-weight bearing on the Perthes hip?

This is something you must listen to your doctor and physiotherapist about.  It depends on what stage the hip is at during the Perthes and re-growth.  Whilst non-weight bearing swimming is usually advised by physiotherapy as a good way to keep the muscles from getting too weak, so that when full walking does resume the muscles are not too sore.

What pain medication seems to be the most affective?

I will never advise specific drugs and you should never take drug advise online for safety reasons.  Without knowing a persons medical history it is not a good idea to suggest medications. People can have allergies to certain medications or find that the side effects outweigh the benefits for them.  What works for one person may not for another.  If you wish to try pain medication, talk to your doctor who can prescribe something for you.  A good doctor should keep an eye on you with regular check-ups when on any new strong pain medication.  There is a place for pain medication if used sensibly and they help a lot of people.

Any ideas on non-medication pain relief?

I found a microwave wheat bag very helpful on my hip.  When sitting or lying down it kept the hip warm and unlike a hot water bottle it bends around the joint.  When moving about a stick on heat pad can help, but must be stuck over the underwear and not directly onto the skin or it can burn.  A TENS machine uses mild electrical impulses to help with pain.  I found one somewhat helpful, but it took some getting used to the electric pulses.  A warm bath is great for any muscle or joint pain, especially with Epsom bath salts.

Is a chiropractor a good idea? 

A chiropractor uses their hands to help relive problems with bones, muscles and joints.  According to the NHS website they are considered an alternative and complementary therapy.  They are not widely available on the NHS and private treatment can cost anywhere between £30- £80 a session.  A chiropractor should by law be licensed, but is not medically trained as a doctor.  I have never been to a chiropractor myself and can’t say they are good or bad for you, but I would suggest trying a physiotherapist first as they are recommended by doctors far more often.

Would a memory foam mattress help?

I think a memory foam mattress might help a tiny bit, but not a great deal.  An orthopedic mattress is very expensive and night time pain can be helped in other ways, such as a microwave wheat bag or a cushion or pillow under the hip.  If a new mattress is needed anyway it might be worth asking your doctor what they suggest, but I would not rush out and spend a lot of money on one without some research first.

Is bed wetting Perthes related?

Not directly.  Many children wet the bed and it varies as to when they start and stop doing it.  It could be that the hip pain is causing anxiety which is in turn causing bed wetting.  Also getting up in a hurry for the toilet when in pain can be tricky.

Does Perthes lower the immune system?

No, some children get more ill than others with or without Perthes.  There is so far no link to Perthes and the immune system.

Is Perthes Hereditary?

Research on the causes of Perthes is being done.  In the UK an ongoing study suggests there maybe a hereditary link in a small number of cases, but not in most.  There does not seem to be a high chance of passing it on to children if you had it yourself, but I gather there is more research results to be published on this fairly soon.

As an adult I am experiencing back pain, is this related to having had Perthes as a child?

It could be, limping for years, long term use of crutches or a walking stick and walking with a bad gait can affect the posture.  I have had back, neck and shoulder pain on and off all of my adult life.  I have found simple exercises from physiotherapy help me a lot if I keep them up regularly.  A shoe raise in childhood can help to prevent limping all the time.

How can I get a buggy or wheelchair for walking longer distances or bad days?

Physiotherapy can provide wheelchairs, but are often reluctant for children as they think it will cause the child to become overly reliant on it and not walk as much as they should, but I found a wheelchair very helpful on my worst pain days and for days out with more walking involved.  You can contact your local Red Cross centre who often have wheelchairs and buggies to loan out on short or longer term basis.  The Perthes Association in the UK have good advice on where to get hold of any equipment you may need.  There are various local charities that help disabled children to get equipment; an internet search can often provide a link.  Some larger tourist attractions also have wheelchairs you can loan for the day, often worth asking at the ticket office or checking online before you go.

 

For more information on Perthes Disease the Perthes Association are very helpful and can answer a lot of questions you may have.    https://www.perthes.org.uk/

Another site you may find helpful, especially if you are in America is Perthes Kids Foundation http://www.pertheskids.org/

 

 

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

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.

 

 

 

 

 

 

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

 

 

 

My Benefits life

‘Disabled people pay “a financial penalty” on everyday living costs, spending an average of £550 a month extra, according to a report by Scope.’http://http://www.bbc.co.uk/news/uk-27029928

I have been on benefits most of my life.  The way the media and other people talk about benefits makes this fact sound like something I should be ashamed of, but I am not.  Sometimes you hear older people say, that they are entitled to benefits as they paid into the system all their lives, I admit I have not paid much into the system at all.  Even when I have worked paying jobs one of them was between college and university so as a student I got my tax payments back a year later.  However being entitled to the money, why should I not take it, I need the money to live on.  I have tried very hard to get paying work and feel that it is not my fault I can’t pay tax into the system when no one will hire me.

Last year is the first time I stopped receiving Disability Living Allowance in twenty years.  My mum first claimed  it in my name when I was eight or nine.  I got it mostly for my Perthes Disease as I could not walk well, but later on she also got a care component for a few years due to my mental health issues as I was more work than a child of that age should have been.   When I turned eighteen I started to get the money myself.  I was by then just getting the mobility component, but found the money very handy.  I certainly needed it when I went away to university to pay for taxis to places some people might have considered walking distance.  For  example at one stage I was having weekly physiotherapy sessions at the hospital and it would cost me £5 a time to get the taxi there, as it was too far to walk to the bus station in town and then from the bus stop to the physiotherapy department.  When my old hip became too much to bear I purchased my own crutches as I knew the hospital waiting list to see physiotherapy about them was long and being in my final year at university I could not wait for them.  I got them online and they  came with a small delivery charge as well.  I think I got them at a very good price, but being a student without much money, I was glad of my DLA to help with the cost.  After my total hip replacement surgery they left me on DLA during the recovery period as it was not like I was instantly up and walking without any problems.  They leave you on DLA for about a year or so until the doctor signs you off to say it was successful, as that is about how long it takes to fully recover.  By this point I did feel like I was no longer entitled to the money, my circumstances had changed, I was walking much further and doing more for myself.

Claiming DLA was not an easy task.  As with most benefits the form is a full on booklet with many questions.  I  am glad they are thorough, I don’t like the idea of people falsely claiming benefits anymore than the next person, but they do ask some questions which are very hard to answer.  In the old DLA forms they used to ask how far you could walk, but in my case but varied from day-to-day.  Many disabilities change daily and many of the questions assumed that it stayed the same all the time.  I just put in my worst case days as although I might have been OK sometimes, if on the day I had to go out was a bad one, then I would need the money.  DLA has now changed into Personal Independence Payment which I gather are just as hard to claim for as DLA if not harder.  These forms are so hard to fill in as part of her job my mum has been on courses on how to fill them in.  They no longer give anyone life long benefit awards, everyone has to be re-assessed, even if you have something you can never recover from such as a missing limb or total blindness, yes because limbs just grow back magically and eye sight just recovers!  I was on low rate mobility which is now called mobility standard, which currently gets you £21.55 a week, which is not very much when you consider the average price of a taxi anywhere these days.  The most anyone could get on PIP now is £138.55 per week, but that includes both the enhanced mobility payment and the enhanced daily living payment.  This might at first sound quite generous, but there are extra payments some very sick people need to make such as using more central heating as they get more cold from not being able to move  as much or more electricity to charge up their wheelchair.

Right now I reviving just the one benefit,  Employment Support Allowance.  This is the replacement benefit for Incapacity and some types of Income  Support.  I am only on it now on a temporary basis as I managed to go and break a bone in my foot.  For about two months I will get a little over £66 a week.  I get a little less than some due to the amount of savings I have, so the more you save up the less ESA you get.  People on benefits are  often penalized for being careful with  money and having managed to scrimp some savings together over many years,which is not easy to do on such a low-income.  I have been on ESA before after my hip surgery for a few months as I clearly could not work.  Some years ago whist at college I was also on Income Support because due to my hip I had the stamina to either go to college or work, but not manage both.  Some would say I should have worked instead of going to college, but how is  a disabled person supposed to better themselves and get even a semi decent job if they can never get an education.  Why should I not get the  same opportunities to learn as everyone else.  Whilst on ESA you can work and earn up to £20 a week in addition to the benefit, which for some people who have not worked in a very long time or ever, it might be a way to slowly get used to the world of work again.  However £20 would not cover the transport costs for a lot jobs let alone make you  ant profit.

I will soon be back on Job Seekers Allowance yet again,which is a bit depressing as I never seem to get off it for very long.  I been off and on Job Seekers since I left college aged twenty-one.  I have come off it a few times, twice for temporary seasonal work and for University.  I think of all the benefits that I have been on Job Seekers gets me the most flack.  I have been called too lazy to get a job, been told  there are jobs out there if I really wanted one, asked why hard-working people should fund my lifestyle and worst of all been called thieving scum.  I would be the first to admit I am somewhat of a lazy person, but I have tried very hard to get a job.  I fill in application after application, attend  every interview I get, go to all my job support courses and meetings when I can and keep an eye out for jobs when out and about in shop windows and on notice boards. I am not that fussy about the type of work I will do, I have applied for shop work, cleaning, basic office jobs and even once as a litter picker.  There are jobs out there, but there are also hundreds applying for each job in some cases.  Since I am entitled to the money and fit the required criteria how does that make me a  thief?  Job seekers gets me £71.70per week, which I find perfectly OK for my circumstances, but if my parents were less generous and made me pay a lot more rent, or even made me move out I know I would struggle on that amount.

My advice for anyone who needs to claim benefits, if you have any doubts about how to fill in the forms go to your local Citizens Advice Bureau as they have advisers trained in benefits and can help fill it in correctly with more of a chance of getting a successful claim.  They can also tell you if you can claim for  any more types of benefit.   I hope to one day get a job that means I can stop being on any benefits for longer than a few months.  I do not like the fact I have to claim benefits, but without  it I would have no income what so ever.  People can not live on nothing.

Confined to a wheelchair

disabledThis is the symbol used universally to represent disability.  You see it in many places such as disabled toilets and disabled parking spaces.  It is a very useful symbol I admit, but it does not represent everyone who may consider themselves as disabled.

To be disabled means to be confined to a wheelchair all the time, right?  Wrong!  Some disabled people are wheelchair bound, but an awful lot are not.  Before my successful hip replacement I used a wheelchair, but not all the time, I used it for long distances, as it would get too painful to walk a long way.  Some days my hip would be more painful than others and on my bad days I would use the chair more.  This concept of a fluctuating disability was very hard for some people to get their head around.  How come I turned up to school one day perfectly able to walk and the next I turned up in a wheelchair?  Someone cruel once said I must be faking it to get attention.  I got no extra help from support staff on my bad days in school and no one would offer to push me in my manual chair, and this was in a special school for disabled children.  People were confused, a disability does not change from day-to-day, either you are unable to walk or not was how people seemed to think.  The looks I got when I was in my chair and suddenly stood up to reach something or got out and walked were sometimes quite funny.

At various points in my life I have used crutches or a walking stick to get about.  When on crutches I sometimes got asked what I had done to myself to end up needing to use them.  People seem to associate crutches with broken bones or injuries of some kind.  It was kind of hard to explain about a hip issue that I was born with.  Crutches are for the clumsy it would seem, not the disabled or so people assume.   With a walking stick people still expect you to be able to walk quite a long way it seems, having been made to walk quite long distances by various college tutors.  I think a walking stick confused some people as they are not seen as something young people would use.

Until a year ago I had a disabled parking badge.  Although I can not drive, I used the badge with other people when they drove to places with me.  It helped me to park closer to the place I was going or to have a bit longer parking time as I walked slower than most people.  I went though fazes of not using any walking aides at all, but still could not walk long distances.  The number of people who assume that as you are not using a walking aid you must be faking it or ‘borrowing’ someone else’s parking badge is quite high.  Most people never said this to my face when I got out of the car, although I did see some funny looks from time to time.  I found this out on a Facebook group I joined for people angry at those who misuse disabled parking spaces.  They post some very rude, angry comments about people using badges with no walking aids what so ever, but loads of us always comment back saying not all mobility problems and disabilities can be seen and we try to explain that you get a badge on the grounds of how far you can walk and not how you walk.  Not all disabilities have a visual to go with them such as a walking aid or clear deformity.  I think hidden disabilities are one of the hardest to convince other people of, that they are real and do have issues that go with them.

I think some people need to rethink disability, not all disabled people are alike.  A lot do not use wheelchairs all the time, some may never have used one.  People are often too quick to judge someone without knowing anything about them.

physically-impaired-symbols-london-1024x216I think these symbols represent disability more realistically than some and show how it can vary.

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.

My life changing experince

What was the one experience that completely changed your life? What happened? How did it change your life?

This is my first ever blog, we will call it a practise blog if you like.  The question I am choosing to answer is the one WordPress give you as a first blog inspiring type thing.

There are a few experiences I could use that completely changed my life such as University or having my first serious boyfriend, but the experience I am choosing to write about is my total hip replacement.

I had a total hip replacement on the 3rd August 2011 aged twenty-five, about a month after completing my university studies.  This was something I had wanted for a while as I was starting to loose the plot being in that much pain everyday.

I grew up with a condition called Perthes Disease (also known as Legg-Calve-Perthes disease).  This is a childhood condition that affects the growth of the hip at the femur or ball and socket joint.  The blood supply is insufficient to the femur and the bone becomes soft and breakdowns. My hip became very misshapen and undersized.  Perthes seems to be random in who it can affect and there is no known reason for it.

My first symptoms were groin and hip pain, and I started to limp.  Walking more than a short distance became quite painful for me.  I was then diagnosed aged about seven.  I had to see doctors and specialists at various hospitals.  I was in hospital for a week on traction (weights applied to my left leg to stretch the hip-joint and leg out) to prepare me for surgery.  However when they came to do the surgery they opened me up and decided my hip was too far broken-down for any surgery to work.  I think they were going to put a special  immobilizing cast on my legs to stretch them out.  Physiotherapy gave me crutches to use instead so I could walk without weight baring so much, which helped with the pain somewhat.  Then apart from a couple more check ups they left me to it.  I doubt there was much more they could do for me, but I wished they had explained this better to me.

Over the years the amount of pain my hip gave me varied a lot.  Sometimes it was almost pain-free and I walked with no aides at all.  At other times I used crutches or a walking stick.  When walking longer distances I would sometimes uses  a wheelchair.   My mum and I had to fight for any physiotherapy help at all at times.  I had exercises given to me to do at home and had a few months of hydrotherapy.

By my early 20s the pain was getting really bad again.  I was told by a specialist that my hip was now fully grown so I no longer had Perthes, but early on sett osteoarthritis.  This I gather is quite common for people who had more serious Perthes.  I was given prescription strength pain killers and more physio and then once again left to deal with it myself.  I managed a few more years and did find the pain killers helped me manage day-to-day life.  However by the age of twenty-four I found myself needing to take more pain relief to cope and that sometimes the pills were just not working for me.  I started having to use more things to help with the pain including a tens machine and heat pads.  I was also getting worried about how much pain medication I was taking, as it can sometimes  make you ill in other ways if you take it a lot for a long time.  I was back on crutches by the age of twenty-five as I was finding walking so painful.

I had asked a few years before about having a hip replacement, but was told by surgeons that I was too young as false hips do not last that long and you can only have so many in one life-time.  However I saw another specialist surgeon aged twenty-five.  At this point I was in Lincoln for university so I saw a different surgeon.  This one took one look at my x-ray and said my hip was  hardly there any more and I could have a replacement if I wanted to.  I knew almost straight away that I wanted to say yes.

I spent a total of three days in hospital including some physiotherapy post surgery.  I was given a series of short exercises to do twice a day at home to help me get stronger again.  Recovery was a long slow processes and sometimes quite frustrating and painful.  I was told full recovery normally takes about six months to a year.  I started to see progress bit by tiny bit almost on a daily basis.  I was on some pretty strong pain medication for a while and had to wear surgical stockings for six weeks to prevent DVT.  Once back home in Devon I had more physiotherapy and leant a new set of exercises to really get my leg muscles strong again.  I went to the hospital gym once a week for twelve weeks.

I would say full recovery took me about nine months.  Ten months after surgery I took part in a ten-mile walk for charity, my feet hurt, but my hip was pain free!  Although recovery took a long time and it hurt a lot, I am very very glad I had my hip replacement.  I can now walk further, stand for longer and do many more things.  I am now fitter than I have ever felt in my life.  I can apply for many more jobs that require standing and walking.  I can go out with other people and join in more fully.

Since my operation I have become an aunt, which is fantastic.  I think one of the best thing about having a pain free hip is how much more I can do with my nephew.  I can join in with a walk to the park or chase him round the house.

I was told my hip will last fifteen to twenty years before it needs replacing.  False hips last longer now than they did even a few years ago and keep improving all the time.  I hope by the time I have my next hip they last even longer.

If would would like to learn more about Perthes Disease The Perthes Association has some good information on their website  http://www.perthes.org.uk/welcome-to-the-perthes-association/

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Me post recovery using my funky purple crutches