Disabled bays are not a form of special treatment.

Ok, I am going to have a little bit of a rant. I went shopping today, which is never a simple task considering everything is built accommodate those who are a lot taller than me. Trolleys are always a struggle not only because they come up to my nose but also I never get everything out of the big ones. Then of course I cannot reach anything above the second or third shelf and paying for items can be difficult when the checkout also comes up to my nose. Then there are my mobility difficulties which make it difficult for me to walk around the shops, hence why I park in the disabled bays because I can limit how much walking I have to do.

 

Anyway due to my size and the fact that I have mobility difficulties I have a blue badge (a disabled parking permit). I parked up and next to me I saw another couple park in the disabled bay. They got out of their car and just walked into the shop with no difficulties. Don’t get me wrong I am not the one to assume that if you can walk you are not disabled, but they had no blue badge and thus it was very unlikely that they had any invisible disability.

Below are links to a group which fights for the rights of disabled drivers and passengers:

http://wantmyspacetakemydisability.com/

Facebook: wantmyspacetakemydisability

What got to me though was when I saw them walking around the aisles picking up items off the top shelf and placing them into a trolley that only came up to their waist, not their face. Perhaps it was the fact that most of the things I wanted were out of reach and I was struggling with a cumbersome basket that I felt angry at them. Did it not occur to them how difficult it is for disabled people to shop and therefore facilities that are implemented for disabled shoppers should not be abused by those who do not need them? Or did they feel hard done by the fact that disabled shoppers get to park closer to the shop than them meaning that they have to use their able, pain free body to walk a little bit further? Or was it just sheer stupidity and ignorance?

People seem to think that disabled people get special treatment as they get to park closer to the shops and that it is somehow unfair. Yet, to me special treatment is not about where you park but about having a whole built environment designed and built to cater for you, leaving out those who cannot walk, see, hear or who are not of average stature. The built environment is created for the average sized, able bodied person so that they can reach all the shelves in a supermarket, push a trolley without someone knocking it into their face, reach over the checkout and pack their bags with ease. Those “special” facilities for disabled people are not there to provide preferential treatment for disabled people but rather some form of access in a built environment which is disabling for them, as well as to accommodate for possible mobility difficulties.

If I did not have mobility difficulties, i.e. if I was not in pain when I walked, and if I could have a trolley that only came up to my waist, I would happily park at the far end of the car park. But I park closer to the shops because by the time I get through the entrance my knees are already burning due to the fact that the nerves in my spine are being crushed by my own spinal cord. I also find it easier to carry my shopping as short a distance as possible as being 4ft tall it can prove difficult to otherwise.

This is what got to me, not only do some people expect everything to be accommodating for them but they also want more at the expense of further disabling someone else. I have been in the situation of not being able to park in a disabled bay because they are full. I wouldn’t mind if all the spaces were full of disabled users, denoted by their blue badges, but many are taken by those with no impairments. This means that I have to walk further and thus be in pain for longer. Perhaps if pain was visible and those who choose to park in a disabled bay, for no reason, could take it away from someone like me whenever they choose to park in a disabled bay. Then they may be reluctant to park their in the future. Disability is not a privilege, it is a bloody annoyance and so are some people.

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Take a picture it will last longer…o no, wait!

People using mobile phones in public can be an annoyance and even dam right rude. Whether its texting behind the wheel of a car, having it go off in the cinema or having to dodge out of someone’s way as they walk along texting, oblivious to the people around them.   The most annoying thing for me though is being photographed or filmed on someone’s phone, because they find my appearance to be amusing. I have dwarfism and although I am stared at on a daily basis, people taking photos of me just seems a step too far. Before mobile phones if someone stared at me I was told to say, ‘why don’t you take a picture it will last longer’. Trouble is a lot of people will.   This sort of behaviour is reminiscent of the Victorian freak shows, where people would pay just see human oddities, including dwarfs. Whilst the freaks shows have disappeared, the mind set has not. People still seek a novelty value in those that look different, especially those who for a long time exploited their difference and in many cases who still do. You can hire a dwarf out for your stag do or for St Patrick’s day, so is it no wonder some people find it acceptable to photograph dwarfs in public? Some dwarfs even hire themselves out to be photographed with anyone who is willing to pay. Dwarfism is a rare yet very distinctive disability, which has often been used to amuse others. The problem is, a lot of us are quite boring and do not like to use our size as a form of entertainment we prefer just to try and live a life like everyone else. I suppose some people would see us as quite rude because we are spoiling their fun, which I was once told by a drunken man because I protested at him making fun of my size.   The first time I experienced being photographed was when I was standing at a set of traffic lights. In the corner of my eye I could see that the car on my side had stopped but the lights had not changed. I thought it must be an over cautious learner driver, but no it was not. The car then pulled up in front of me, I suppose to get a better view of my amusing body, whilst the passenger took a picture of me on his mobile. This is not uncommon for dwarfs. Not so long ago an organisation for people with dwarfism, fought against Facebook to have dozens of photographs removed. The photos were of dwarfs just going about their daily business, unaware that they were being photographed and these photos being uploaded onto the social networking site in order for people to leave abusive comments upon.   The problem is that it is unavoidable, most people have a mobile phone which is equipped with an in-built camera. In some case I do not notice people trying to take a photo, because some will try and do it behind my back, I only realise they are when my friends begin mouthing off at them. It spoils a good night or outing, you become paranoid because you do not want to be photographed and later shown to all their friends or uploaded onto a social network site where everyone can have a good laugh at the expense of your disability. I do wish people would just go back to using their phones for making calls and their cameras for taking pictures of beautiful landscapes, interesting landmarks and not people who are born different. It’s sad.  

The Highs and Lows of Theme Parks

Theme parks can be great places for disabled people as often they will try and accommodate for your needs and make the experience a memorable one but despite this they can also be places which remind you of your disability and how you are different from the rest.

I love theme parks as they are able to provide you with the stomach churning thrills that not even driving over a humpback bridge at 90 mph can give you. One of the perks for a disabled person is that you can get into some for half price and can jump the queues which the able-bodied person has to pay extra for. Finally I felt this was a place where the disabled had one up on the non-disabled as the theme parks really did seem committed to catering for the disabled.

Jumping the queues is especially great for someone like me who has restricted growth as it means I don’t have to stare at somebody’s backside for an hour as I get to go straight to the front and this also means getting my own back on the children in the line that have been pointing and laughing at me. What’s makes me come back down to Earth with a thud though is when I get to the front and I am forced to stand by the giant ruler for all to see me being measured. Now, I am use to people staring at me when I am out and about and I am also use to the odd person coming up to me and asking how tall I am but being measured in front of a queue of people is rather humiliating even if it does satisfy the odd person’s curiosity. This is when everybody in the queue gets to gawp again at the dwarf, see how tall she really is and whether or not she is too small for the ride. Sometimes I think people in the queue should take bets on my height, it would at least give them some entertainment as they wait another half hour before they can go on. It would also mean the theme park can make a few extra quid, making up for my half price ticket.

Seriously I am not going to risk my life for the sake of a cheap thrill despite how good the ride looks and I am especially not going to give the tabloids any reason to find an amusing pun about the dwarf who was catapulted 100 feet into the air and to her untimely death. I know which rides I can and can’t go on which is why you will find me loitering around the Oblivion waiting for my friends to come back and tell me how good it was.

On one occasion to a theme park I was once given a wristband after the first time I had been measured which stated my height but that didn’t help as every time I went to go on another big ride I was forced once again to stand by the ruler just in case I had got away with it the first time by wearing platforms reminiscent of the Spice Girls.

To be honest I don’t mind being measured, I know the theme parks have got to cover their backs in terms of health and safety but please can we do it in a more discreet place away from the public who already find my height a source of amusement? Or why can’t I just be measured the once and have done with it as I don’t shrink between rides no matter how strong the G forces are. I mean if there was any chance of a ride making you smaller I would be the last person to go on it.

Dwarf, little person, restricted growth…what’s the correct word?

I think there is a lot of confusion surrounding the correct word to refer to someone who has dwarfism. I often see online comments, relating to articles about dwarfism, saying, “Isn’t dwarf offensive? Don’t they prefer to be called midgets?” Thus, I want to attempt to sort out any confusion.

The only term that most people with dwarfism find unacceptable and offensive is midget. Midget is an unacceptable word as it is used to insult, dehumanise, ridicule and has no association with the medical aspect of dwarfism. It was popular during the Freak show era when it was felt acceptable to showcase people with dwarfism for people’s amusement, although not much has changed. It is the word most people with dwarfism have experienced being shouted at them as they walk down the street. Since I was about four years old I have had that word shouted at me by kids and adults when I have been out and about. It has been compared to the n word because of the way it is used towards people with dwarfism. I like that comparison, not to compare histories but to show that the word midget is the most offensive word to use towards somebody with dwarfism just like the n word is the most offensive word to use towards black people.

The most accepted terms are: person with dwarfism, dwarf, little person, person of restricted growth and person of short stature. I find all these terms acceptable although my preferred term is person with dwarfism. Despite these being considered accepted terms, they are not accepted by all. For example someone may use the term little person, but dislike the term dwarf and vice versa. I don’t mind dwarf or person with dwarfism but I don’t like restricted growth or little person, although I am not offended by these terms.

Whilst a lot of people with dwarfism like the term little person, especially in North America, I don’t like the term and I know a lot who feel the same way. I connect the term little person to a child, or a Fisher Price toy. To me it is infantilising and there is enough confusion in society as, due to our height, some people treat us like children and thus I do not want to encourage them any further by giving my disability a name which relates to children. I have friends who refer to their toddler as “their little man” which is enough for me to refrain from using that term.

I don’t like restricted growth or short stature, because they sound too much like vertically challenged which is usually used in a mock way and because they fail to encompass the other aspects of having dwarfism, such as mobility difficulties and a disproportionate body size. They also lay blame with the person, and as you know I prefer the social model of disability as opposed to the medical model.

I don’t mind the word dwarf, but it makes me think of Lord of the Rings or Snow White. It can also be dehumanising, as I am a dwarf, not someone with a medical condition. Through just saying I have dwarfism, denotes that it is a part of my identity but that is it. It is just like saying I have Brown hair and that I am from the UK. Saying I am someone with dwarfism links me to an actual medical condition and fits in more with the social model of disability. I am dwarfed by average height people, and by spaces and facilities made for average height people. This indicates that I encounter disabling situations due to a built environment created for the average sized person.

Overall, Person with dwarfism, dwarf, little person, short statured, and restricted growth are accepted terms but like everyone else people with dwarfism are not a homogenous group and will therefore prefer some terms over others, except for midget.

I do not suffer from dwarfism, I suffer from how people react towards my dwarfism

For a long time now I have come across stories, mostly in newspapers, about people with dwarfism and how they ‘suffer’ from their dwarfism. This implies that dwarfism is causation of a person’s suffering. I want to set the record straight – I do not suffer from dwarfism. To say that I suffer from dwarfism lays blame with me and not society. That resonates with, the outdated, medical model view of disability. Instead I prefer to see disability from a social model perspective which lays blame with society, in other words society creates disability. This can include inaccessible buildings and facilities ergonomically created for the average sized person to people’s attitudes towards people with dwarfism.

Ok, I have spinal problems which cause me to be in pain, especially when walking, but that is just a part of my dwarfism. Then there is having to interact with spaces and facilities unsuitable for my size, but for now I want to show how suffering comes from society and how people react and treat people with dwarfism.

I ‘suffer’ from the pig ignorant attitudes towards my dwarfism, such as when I walk down my local high street and people stare, shout, laugh and point at me because I have dwarfism. I suffer when people call me a midget, oompah lumpah, mini-me, when they ask me for a blow job, when they sing ‘hi ho’, when they stop to take a photograph or when they encourage their children to point and laugh at me. It is their reaction towards my dwarfism which makes me suffer. They make me feel out of place and as if it is acceptable to mock my dwarfism because it somehow makes me sub-human.

As mentioned I have spinal problems which cause mobility difficulties hence why I have a blue badge. It also means that as someone with dwarfism I don’t have to push a trolley, which comes up to my face, or carry shopping bags which often scrape across the ground any further than I have to when at a supermarket. Yet, to see me is just to see a short, young woman. This does not resonate with the stereotypical view of disability, a wheelchair user or an older person, and thus someone entitled to park in a disabled space without confrontation. When I park in a disabled bay, legitimately, I shouldn’t have to wave my blue badge at an older person who shakes their head at me in disgust. Whilst my dwarfism is clearly visible the tightness of my spine and the nerves trapped within it are not. Again, it is people’s presumption about what a disability should look like which causes suffering.

I may not suffer like someone like someone in a war zone, but if media outlets are going to say I ‘suffer’ then at least get it right. Saying someone suffers from dwarfism, makes it sound as if dwarfism is something bad whilst ignoring the external factors which affect someone with dwarfism. Before a person’s presumes that a disabled person ‘suffers’ from their disability, they may want to firstly think about how their actions can cause suffering.  If I could use disabled facilities, which often make dealing with a built environment for someone taller than me easier, without confrontation I wouldn’t suffer. If I could walk down my local high street or visit different places without receiving any unwanted attention towards my dwarfism I wouldn’t suffer as much. Even if a child stares at me, if their parents actually stopped and explained to their child, instead of ignoring their child or encouraging them to laugh, I wouldn’t suffer. It is the external consequences of having dwarfism which causes suffering, most of which can be easily avoided through education and treating people in the same way you expect to be treated.

 

Special Schools – Why I am glad my Mother never listened to the ‘professionals’

As someone with dwarfism my employment choices are limited. That is not to say that people with dwarfism cannot become anything other than panto stars or props for stag dos. A lot have become lawyers, teachers etc…When I was younger I wanted to be an air stewardess as I enjoyed flying. This was not to be though as I was not tall enough. I also found out there were plenty of other jobs I could not do, or others presumed I would be unable to do. I remember applying for a part time job, when I was 16, and when I handed in my application the woman looked at me confused and said, “Is this actually for you?” With my job prospects already limited by my physical disability it made sense to make the most of my education in order for me to try and gain an advantage.

I started school in 1989, which was quite lucky as I have heard off other people with dwarfism that it was compulsory, in a lot of places in the UK, for people with dwarfism to attended special schools up until the late 1970s early 80s. Whilst it was no longer compulsory that did not stop social workers trying to send me to one.

I remember pre-school. There were several other children there, all with disabilities. Apparently it had been suggested to my Mother, by social workers, that I should attended a pre-school for children with disabilities. Then came the time for me to start Primary School. Again social workers suggested I attend a special school as opposed to my local Primary School. This time my Mother refused and I was sent to Ysgol Hirael (I grew up in Wales). I did everything the other children did, except for P.E. as I developed spinal problems around the age of nine.

Then it was time for me to move on and start Secondary School. You guessed it, it was suggested again that I attend a special school and not the school my older siblings had gone to. They really did not get the message. Let’s make it clear Achondroplasia (I spelt that all by myself), the form of dwarfism I have, is a physical disability not a learning difficulty. Ok, I was told by a man in the pub I was stupid because I was small, but I expected those who deemed themselves “professionals” when it came to disability to know better. Clearly they didn’t and told my Mother that I would be better off attending a special school. I don’t see how, as I have explained my job prospects are already limited and thus if I was to learn at the same pace as children with learning difficulties I would have no chance of getting a job. They suggested I go to the special school as it had special adaptations for people like me. I only needed a few adaptations, what was wrong with them being made at a regular secondary school where my educational needs would not be affected? Did they not care about my education or did they think I actually think I had a learning difficulty?

Common sense finally prevailed and I attended Ysgol Friars, where I later passed my GCSEs and A levels which meant I could go off to University. But the professionals were not happy. Therefore I was taken of the class and made to do tests with some child psychologist because they were determined to prove that someone with a physical disability must also have a learning difficulty. Now imagine, you have just started a new school and you are the only person with dwarfism there. You look different but to further exuberate your difference somebody comes to take you out of class so you can have tests to see whether you have any further differences. I hated them. I remember one test which involved staring at a picture and having to draw it 10 seconds later. I didn’t take much notice but the test like I was told to. From this they tried to prove I had a short memory. They must have felt so great finally finding something wrong with me. They didn’t stop to think that as a pre-teen who already stood out from the crowd I really did not want to bother with any other tests which made me feel more different.

When the secretary came to class the next time to take me for tests I told her I wasn’t going as I saw a proper Doctor in Liverpool who actually knew about dwarfism. She didn’t protest and after that I never saw them again.

After I finished Ysgol Friars I went to University and later did my MA and then was awarded an ESRC studentship to study for a PhD in Human Geography, which I later completed. If my Mother had listened to these so called professionals I doubt I would have gone to University.

Those in the profession whose job it is to help disabled people should really aim to help disabled people get out of disabling situations instead of plunging them further into them. Perhaps a good start would be to recognise that disability is not a homogenous group, but rather a group made up of various impairments and disabilities. Placing someone with a physical disability into a special school is like giving someone with a learning difficulty a wheelchair.