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Officially a freak and relived

I have always known there was something a bit different about me and I have long suspected I have autism, but no one actually sent me for testing till I was thirty one. I had to actually ask for it and then wait over a year for the appointment at the clinic. It took three appointments, two of testing and one for the results. I had to take a close family member with me, in my case my mum and she also had to answer a load of questions about me and my childhood. (Not so easy to remember everything over twenty years later!) I am now officially diagnosed as high functioning autistic or what used to be known as Asperger’s, but they changed it to reflect the fact that high functioning covers more types of people with it. They asked me how I felt about the diagnosis, so I said relieved, it helps explain a lot about me. It also helps me explain myself to others at times and I am hoping in future will help with things like benefit claims or getting job seekers support.

Not long after my diagnosis I found a fantastic book in the library called Freaks, Geeks and Asperger’s Syndrome by Luke Jackson. He wrote it when he was thirteen and it is a brilliant insight into what it is like to have high functioning autism. I can relate to a lot of what he says and he helps me to explain things better to others. I will use some quotes from the book as jumping off points for me to discuss my autism.

AS (Asperger’s Syndrome) is usually described as a mild form of autism, but believe me, though the good outweighs the bad, there are some bits that are most certainly not mild.’ You try telling the parent of a screaming child far too old to be having a temper tantrum in the middle of the street that it is mild! I remember wishing it was less mild sometimes then at least they may have taken my problems more seriously in school, but of course I am glad it is not any worse.

When we didn’t know and didn’t have a diagnosis (or were not told about it) it was a million times worse than you can imagine.’ ‘You may think that if the child or person you are seeing has lots of AS traits, but you can’t fit them neatly into your checklist of criteria, you are doing them a favour by saying that they haven’t got it. In fact this doesn’t make them not have AS, it just muddles them up more and makes them and all around them think they are even more ‘freakish’.’ Quite a few people have asked me if I really needed a diagnosis, would it not better just to be happy with myself as I am. I get where they are coming from, but knowing is better than not knowing, as it means you can understand yourself a lot better and so can others. I remember being bullied as the class freak and weirdo. I was the odd child that did not quite fit in and I never had any way to explain myself. If I had been diagnosed it may have helped school to help me and it might have helped me to feel like at least I was not a total looser and freak.

To be on the autistic spectrum is not the same as being on death row- it is not a death sentence, it is not terminal, it is merely a name for a lifelong set of behaviours’. So if you suspect you child has autism push for them to get tested for it and do not ignore it. It is not the worst thing that they could be diagnosed with and it may even help them to know they have it. It could help them find support and maybe even get taught in school in a way that is more useful to them.

I can imagine how adults have gone all their lives confused and misunderstood would seem as if they had a severe mental illness. I am sure it would cause depression too.’ I have suffered from depression in the past and have anxiety issues which I am sure are not helped by my autism. I think that if I had been diagnosed and helped at a younger age it might have helped me to not develop such bad mental health issues. Not knowing what was wrong with me as a child did cause me to feel very isolated and frightened at times, which I know made me more of an anxious person and depressed.

I just have to talk about it and the irritation at being stopped can easily develop into raging fury.’ I have always been known as a chatterbox, but for me not talking as a child just seemed wrong, if I had a thought I had to express it out loud. To not be able to express my thoughts was very upsetting and I felt like if I did not express them they would get louder and louder in my head till they were too much to handle. I used to get very angry if I was interrupted or prevented from talking to the point I would scream and shout just to be heard. Although I still talk a lot, I no longer feel I have to express every single thought that comes into my head and have learnt to be quieter in some situations.

Seem to speak rather differently and have difficulties understanding a lot of other forms of communication such as facial expressions and body language. These can be learned to a certain extent I think.’ I now think I am quite good at recognising facial cues and reading body language, but it took years of practise to get this far. I sometimes struggled to understand people when they were not being literal. People seemed to make jokes about things that I did not find funny at all. I understood that it was sarcasm, but I often found I did not like the joke. I think my performing arts and drama studies have helped me a lot in understanding body language, expression and emotion in others.

It seems as if the taste buds are over or under developed.’ It is to do with the presentation, the texture and the smell of food as well as them needing sameness.’ I had a huge thing about the texture of my food as a child, I hated any lumps or bits at all, I even hated bread with seeds in. I wanted all my food smooth like a paste when I was very young. Bits felt very wrong in my mouth and hard to swallow. Now however I love texture in my food and adore seedy bread.

Most AS kids genuinely have a really hard time with games.’ I hated PE in school, sometimes for me it was like a form of torture. I had one teacher who accused me of being lazy, but it was not that at all. It was the fact I would have to change, and then change back again, which with my OCD was one of the hardest tasks they could set me to do by myself as a child. The whole changing into a PE kit thing seemed pointless to me anyway as I could barely catch the ball, let alone do much with it, so I never broke into a sweat. I was unable to keep up with team sports and my coordination for catching and throwing is woeful. It was not helped by the fact that I had no friends whatsoever in my first secondary school and whoever ended up with me on their team resented me for it.

It is very unfair of the media to portray us all as people who talk continually about train timetables or constantly talk about dates or facts, or computers. We are called freaks and nerds enough anyway.’ ‘Despite the film Rain Man, we don’t all have these amazing mathematical skills- I wish!’ ‘Savant autistic is very rare- I seem to have got the nerdiness and freakishness, but none of the genius. These programs seem to make Joe Public think we should all have some seemingly supernatural ability and that is not at all helpful.’ I have in fact got terrible maths skills; one teacher even suggested I might have a maths learning disability. I am now able to use enough maths to be able to function in everyday life, but as for fractions and algebra I never understood them. I find train timetables very useful for catching trains, but dull as ditch water to discuss at any length. I can be very nerdy at times, but I really do lack the genius part, I actually had to work very hard to get to the degree I now have and was never a child prodigy at anything.

I just don’t want to run with the pack. I don’t see the point in pretending to like things when I don’t.’ I never seemed to like the same things at school as everyone else and I most definitely did not fit in with the social life my friends had at college. I could never understand why they wanted to go out drinking heavily and end up in some nightclub listening to awful music. I never saw the point in pretending to like things just so people would be my friend as they would not have been true friends anyway. I was bullied for being different in school and was actually quite depressed for some of my teenage years, but I never saw why I should have to fit in just to please them.  Both at university and now I have made real friends who actually have some of the same interests as me and we enjoy spending time together.

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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

For the want of a diagnosis

I have been trying to define my mental illness for years.  I decided that I have a combination of mental health and learning disorders that overlap and interfere with each other.  However apart from OCD I do not actually have anything else officially diagnosed in my medical notes as far as I am aware.  I have been told by medical professionals and therapists I clearly have other issues going on, but they have always failed to define exactly what it is I have.  I do not fit the boxes society likes to categorise people into, which is a problem when it comes to certain things.  I seem to have high functioning or borderline conditions that taken separately do not seem that bad, but together make me frankly a mess at times.

One of the hardest things to do when you do not have an officially diagnosed illness or overlapping ones is to fill out a government form.  Recently applying for Employment Support Allowance benefit was very tricky.  I failed a medical assessment as I did not have any medical evidence apart from OCD and I come across as coping quite well when I talk about things.  The initial form and medical seemed to take each issue separately and failed to take into account how my conditions interact with each other.  Luckily at my appeal tribunal they did seem to look at my issues as a combination of things and how they affect me as a whole person.  Also they allowed my key worker at the time to speak up for me and say how it really is, which the initial form had far less room to do.

School was made harder by not having my mental health and learning disorders diagnosed.  If things had been diagnosed they could have gone on my statement of need, which hopefully would have been read by my teachers and then they could have helped me more in the right ways or at least have given me more understanding.  Instead I had a deputy headmaster who told me I was attention seeking and that my crying was crocodile tears.  I think the fact that I am verbally articulate and read and write well contributed to schools not picking up on my issues and suggesting I should be tested for anything.

Getting a job has proved very difficult for me.  Two seasonal part time jobs are the total extent of my paid work history, despite getting many interviews and most of them seeming to go well.  I can not explain my mental health and learning disabilities to potential employers, as I am not exactly sure what to tell them.  It can be hard to explain high functioning; overlapping conditions, even harder when you can’t even put a name to what it is you have exactly.  So my guess is that in interviews I may sometimes come across as a bit odd or different, something employers can’t quite put their finger on seems to be putting them off me.

I have had a few attempts at therapy over the years, but again without knowing exactly what I have it can be hard to get the right help.  I have mainly had Cognitive Behavioural Therapy for my OCD.  Well this has helped a little, it never seems to get past the initial stages before my therapy sessions run out or I hit some other obstacle that makes it difficult.  For a start therapy only seems to deal with one issue at a time, which makes it hard for me.  I try to carry on my therapy at home only to find it triggers other issues I have such as my emotional behavioural problems, so I end up taking out my stress on those around me in anger or crying and getting depressed.  I would like to find some therapy that helps me deal with my issues as a whole taking into account how they interact with each other.  However it seems very hard to get any kind of therapy without named conditions and the types of therapy available on the NHS seem very limited.

Since I started writing this blog progress seems to be happening on trying to diagnose me.  I have an appointment at the autism clinic fairly soon.  The appointment took well over a year to come since being put on the waiting list, which is so long I had almost forgotten I was on the list.  I have wanted to know for certain if I am autistic for many years.  I am pretty sure I have high functioning autism, but an official diagnosis on my medical notes would really help.  It took me changing doctors surgeries and having a mini break down for my mental health issues to be taken seriously for the first time in a long while.  I actually had a mental health assessment with a mental health nurse for the first time as an adult, my last one being when I was about eleven.  She seemed to really understand my issues and made sure that something was done to help me.  I asked if I could have an assessment for autism and she actually said that would be a good idea.  No one in twenty-nine years before that had referred me to the autism clinic despite seeing therapists on and off since I was a teenager and clearly having problems.

I hope to get a definitive diagnosis soon so I can start to make sense of who I am, but also just to make my life that little bit easier when it comes to filling in forms and sorting things out.

 

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

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

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

This is why I find it so accurate:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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