helping mencap and social services to educate a hospital on intelectual disability

this coming monday am going along with the UKs national intelectual disability charity; mencap, plus a buddy of mine-whose a fellow service user of the social services intelectual disability team... PLUS the intelectual disability team themselves to help educate a whole hospital on ID.
we both have severe communication impairments;his being much worse so it will be a challenge to get our views across,am going to be getting a new laminator this weekend hopefuly to make new symbols to help us and it will also hopefuly remind them that getting a book of symbols in every ward and making sure all frontline staff know about it shoud be a minimum;there is a book of symbols in accident and emergency but very few of them know of it.


cant wait to do this as have got a lot of history with the hospital;mostly bad though was born there thirty years ago to,when was born;they told mum was going to be a violent child because of the fact am red haired and they also said woud have a very low pain threshold,ahhhh the eighties.

accessing a hospital with autism & intelectual disability

was in hospital two days ago to have two teeth out and fillings done,as someone who has severe challenging behaviors from autism & ID [have mentioned this many times on the blog and elsewhere but ID is diagnosed as LD in the UK and what the US calls LD is what the UK calls learning difficulties,confusing eh?]  am given all dental treatment under general anaesthetic.

have been stressed about this for months but especialy recently as have got big physical medical issues at the moment including the highly painful and not pain controled lumbar spinal injury, any dental work triggers the trigeminal neuralgia which is a severe facial nerve condition that is also known as the suicide disease because of how painful it is so have got a bloody big right to be worried.


the trafford ID team and the special needs dentist of mine had been preparing this for a while, regulary visiting to explain with symbols and easy read information,discussing what will happen and the path we will take into the hospital and was put first on the operation list because of the level of behaviors that result from waiting.

the day finaly came and we finaly drove to the hospital,but the the driver of the two support staff hadnt a clue how to get into the back entrance of the hospital so we ended up the wrong way down a one way street and some old woman in a car waving her fists at the staff.

was given a private side room,and allowed to wear own clothes instead of the hospital clothing because of sensory and change issues.
the anaesthetist came in for a visit to say hi-she is a specialist in anaesthetising people with ID,and it turned out already knew her from past visits in the years gone by.
then one certain CSW madam from the trafford ID team came in to support as well,and was really greatful she was there to help calm and stop self from kicking off as was getting very bad with all the waiting,so yeah-thanks L,am really greatful for rushing to get to the hospital.

eventualy we went down and they kept the environment as calm as possible and the nurses and everyone was really nice,was given the canula and IV fluids hooked up,then the general anaesthetic to-can remember ending up fighting and being partly pinned down to stop from pulling at arm when the GA went in because it felt like a shock up arm,then woke up in recovery with that familiar disgusting taste in mouth,the madam;L was there.

it was extremely painful and was given sixty mg of codeine,am greatful they understood,am fed up of people not taking any pain of mine seriously enough because am not able to communicate pain or physicaly show pain.

was then allowed to take the rest of the morning medication;had been made to take most medications of mine at six am that day,but now was finaly able to take the naproxen which also helped with the pain.

had quickly recovered and was desperate to get out of there due to anxiety,coudnt wait for the dentist to finish the next patient so was allowed to be discharged,they said will want to go to bed when get home but just spent the day doing gardening on a raised flower box and watching dad put the rabbit run and connector pipe together before collapsing on the sofa in front of series four of breaking bad.

the day surgery team rule, pity all the hospital staff cant be like that, which is why canot wait to help train on severe autism and ID them soon.

heres some photos of just waking up in recovery,and one taken just as we got home;

the use of retard,and what intelectual disability is all about

now this is a real hatred of mine.

as its probably known by any readers of the blog,am completely against the term retarded or the out of date DSM diagnostic label mental retardation.
will face plant palm every time see an aspie or a NT use the terms because they dont understand the near and far consequences retard/mentaly retarded has on someone who is intelectualy disabled.

heres why...............

a]am intelectualy disabled [AKA learning disabled in UK definition] and am directly affected by the godawful and just wrong word.

b]retard is a highly dehumanizing,bigoted,elitist and limiting word that directly affects a group of very vulnerable people whether its being aimed at an NT,a high functioning disabled person or an intelectualy disabled person,its outdated and shoud be in the past with hitler.

c]mental retardation as a label is outdated and no longer in use;it was finaly changed in the DSM manual last year along with the autism changes that were made,but unfortunately a number of americans didnt seem to notice this and carried on calling us mentaly retarded and not intelectualy disabled.
in fact,for the past several years;many american organisations have been swapping to intelectual disability so there was no excuse.
some people who have got no idea have said theres nothing wrong with the label so they wont change their useage; that just shows a massive lack of respect for a group of vulnerable disabled people who in many cases woud not be able to sit here and stick up for themselves on the internet like am doing now.

d]mental retardation as a label is untrue.
those of us with intelectual disability dont have a slow mind we have a limited mental capacity which gives less room for storage of data-this has a knock on effect on our functioning,understanding and learning level. even as adults we have high support needs,significant difficulties with understanding basic concepts, with personal care and toileting, with language and communication,we have no concept of danger, we have difficulty comparing ourselves to others and dont understand differences in people-some of us are unable to discriminate at all which in itself is a gift in society. we lack self awareness of our limited mental capacity; people who think they have ID because they are slower learners/thinkers than others do not have ID;we dont have the capacity to recognise ourselves as limited and to compare ourselves to others in that way to make a judgement, have often seen people say they think they have/or they have ID but are not diagnosed; on the internet,and they will say how difficult they have it,how slow they are,how behind they are etc; that is a whole load of self awareness and social understanding we do not have, people who write stuff like that seem to have low self esteem or seem to crave being patronised and treated as a lower level than they are-those of us who have genuine ID do not feel any borders or limits nor do we like being patronised.

e]just because we have intelectual disability it doesnt mean we cant have smarts,we may be less complex than others in our topics of choice but we can be just as passionate and dedicated about something as anyone else.

f]the use of retard as a slur,towards a bunch of foolish NTs for example is ignorant,childish and discriminative, people who use it as a slur dont seem to realise the term is associated with US, and by calling people retards for doing something foolish they are comparing their behavior to ours, it is sub conciously abusing us-not them,we are the ones who are being compared with people who can help whatever stupid behavior they are doing,please stop associating us with whoever it is; we are neither retards nor the fools doing that behavior.

g]we have intelectual disability,we DO NOT have the mind of a child,those of us who are adults have an adults mind;we spent our whole lives earning adulthood just like everyone else we deserve the same respect; we just have a limited mental capacity [read >d<].
treating us like children in adult bodies is sickening,dehumanizing and so ignorant and prejudiced.

learning disability activism

most people who read this blog know am learning disabled [the UK definition for what america calls intelectual disability],and probably to a lesser level know am involved in learning disability and autism activism-online and offline.

due to all the stuff thats gone on recently,it has stopped some projects of mine from happening but am begining to start them finaly.
project A is making a group of pictorial based easy read books for people with learning disability especialy; based on tasks that they may face in their life; or things they may want to do but theres no adapted information for them.

project B is pretty damn awesome-being a quality checker of busineses in terms of how they acomodate autism and learning disability; particulary to those of us with more severe or profound needs/difficulties.
am going to be making a set of questions and going to businesses/places and questioning them on it to see firstly what they woud do to accomodate customers with autism and/or LD,and also their understanding of autism and/or LD,plus hopefuly leave them some information on each disability to show how much they vary between us all.
--if anyone has got any good questions they woud like adding to the list,please comment.
we will give feedback back to the businesses on any improvements we can suggest and with their consent am going to be making a online database of all the businesses who are what we can definitely call autism and learning disability friendly-this is so parents,carers etc can safely know where to take their child/service user,or where individuals themselves can choose to go safe in the knowledge theyre not going to have access issues.

project C is going to be a activism and self empowerment group for people with autism [of any form or severity] and/or LD,the idea will be for people to get things off their minds,know they got someone listening to them and maybe find ways to solve it within the group;a form of support in a way.


for the symbols am using a board maker type program called picto selector-its free and has been going for years but having being a linux only user up until a month or so ago when needed the new laptop; had never had the oportunity to use it, have spoken to the developer about how much am benefiting from his program and he said he will always keep it free;hes a top gent.
will do a review on it some time soon.

learning disability institution,finaly feeling some closure

several months ago we were driving past an old haunt of mine,and had asked staff if we coud stop in the car park so was able to get some photos.

at age nineteen,had been moved into a learning disability institution in manchester because mums alcohol drinking was getting worse and dad wasnt able to cope with em on his own.
a lot of people complain about LD institutions a lot but this one had been incredible,it was its own little community within a community,lots of land and trees around it which acted as sound proofing-  unfortunately the same quality coudnt be said for the staff,most of whom were severely abusive oldskool evil twats.

some years back,the UK government had decided to close all learning disability institutions down out of the belief that every one of us in the UK with learning disability [that is,the UK definition,not american/DSM,before anyone thinks am suggesting people with dyslexia,dyspraxia etc need to live in institutions] are able access community living,unfortunately in their quest to look progressive they didnt properly check that out first,many of us are unsuited to community living.
without any transitions was quickly transfered to a residential home without risk assessment and it was an absolute hell hole in terms of understanding,accomodating needs of mine and how they allowed a resident to bully all of us and get what she wants for an easy life,when em hit back at her it was em that was transfered to new residentials over and over and over to the same kind of environments; never risk assessing acording to what was told.

the institution was the first place had ever lived away from the family home,it was the first place had ever had the slightest bit of independance,it was the first place was able to say had made it,am not going to be stuck being cared for by mum and dad for the rest of life like doctors and teachers always said.

was also badly abused in there for years......there was a lot of unfinished business, never having had closure.
going there and getting the picture was some closure,it helps to look at it.
am amazed its still in the same condition,except they have fenced off what used to be the respite wing, and the ambulance bays in the car park at the front have faded away.
anyway,here it is,the view of [what was] the reception,the managers offices [at the top floor] and the respite wing-

classic autism, classicaly abused

am fed up with both some parents of autistic kids and many of the autistic community saying those of us with classic autism do not have good points, they say we are not able to achieve anything unlike people with high functioning autism.

what gives anyone the right to define our lives and judge our achievements by theirs when we have very different lives and have a lot more of our own challenges to deal with?
what gives them the right to say we cannot achieve things and aspie or neurotypical people automaticaly achieve big things when much of society do not work nor contribute in different ways to that which is around them?
how does that make them more superior?

and how dare anyone say we are retarded!
we are not 'retarded',those of us on the spectrum who are also diagnosed under intelectual disability [known as learning disability in this country,what people call learning disabilities in america-such as dyslexia,dyspraxia etc are most commonly refered to as learning difficulties here and sometimes specific learning disability or SPLD] have different levels of limited mental capacity which affects how we process things,under stand things,how we see the world,causes us difficulty in learning; especialy the meanings behind things,it is not because we are 'retarded AKA 'slow', we have a limited mental capacity which has a knock on effect on capacity level to learn,understand etc.

americans have long understood how grossly offensive and historicaly abusive 'retarded' is to us, including when used as the medical label 'mentaly retarded' which is an ancient throwback to the old assylum years when intelectualy disabled people were locked up, forgotten about, abused taken advantage of and murdered without a care in the world because we were classed as inferior sub human beings and it is still the same way today,it is quite surprising that a lot of the elitism and discrimination comes from people with disabilities themselves.

thankfuly this year sees 'mental retardation' thrown out of the DSM manual and replaced with intelectual disability,they have the cheek to call us the slow ones when they have known the labeling was wrong for so long.




here is a list of some achievements of mine,as someone with severe classic autism.

• developing different/alternative forms of communication.
• at twenty one,learning to accept hugs without attacking people-and actualy coming to realise that tight hugs were awesome.
• having a profound connection with animals,being able to calm the most agressive horses through natural behavior and connection.
• being a advocate for several profoundly autistic adults.
• being a dressage and show jumping rider for the riding for the disabled association [RDA] with no saddle and no stirrups and never having fell off once apart from when in seizures.
• with the high support of the owner of the fairfield residential organisation and staff;including putting information into PECS booklets; was able to incubate and hand rear many chickens to be our pets.
• am much better with coping with the feel of water on hands now thanks to having to sort the chickies out.
• am able to put linux on computers,screw it up usualy but will keep trying till it works.
• am a new athlete of the special olympics.

presenting-a new anti cyber bullying campaign

no more bull!

had starting making a website for this a long while ago but the webhost had used at the time was really bad and had poor uptime, so have found this other one which has very good uptime,theres just one company advert on it  at the bottom of the page but its fine.

its early work in progress at the moment,but theres enough on it to release it.

it is a campaign to highlight the targeting and cyber bullying of learning and intelectualy disabled adults.
most people only think kids get cyber bullied but it is a regular problem for many vulnerable learning disabled people because we are less able to fight back or realise we are being bullied before we are in to deep.

all the main learning disability charities havent done any campaigns against it and when had looked for one to turn to when was being bullied there wasnt any sites,the only bullying that bullying charities think exists for adults is in the work place!

adult cyber bullies who are deliberately targeting and preying on vulnerable disabled people are showing clear signs of anti social personality disorder [pyschopathy & sociopathy] and it is about time we had learning disability charities looking into this.

we deserve as much right to use the internet as anyone else,people who abuse it by destroying other peoples freedoms shoud be tracked down and sent before the court,hopefuly ASBOd from using the internet to.
like there are courses for people who drink and drive,there shoud be courses for predatory cyber bullies and serious vicious trolls who have been refered by the courts.


*click here for the website*
the site has a contact page,if are learning disabled or parents/carers of learning disabled people, please check out the contact page because have got some questions on there woud like to hear off others so they can be added to the site.

if woud like to see a forum,please say so as well because will add one with enough interest.

if scroll to the bottom of the home page will also see have added a facebook like thing and facebook comment box,to make it modern friendly.