Tuesday, 26 August 2014

an open letter to companies; RE two to one support

dear companies,
please!! consider looking at the way support staff are accomodated when those of us with two to one support [or three to one in some cases] pay our money to access the companies services,we are being left out of accessing many services because of ancient company regulations that do not recognise our needs.

those of us with severe disabilities are already on very little money as we have to pay all of ours towards care,mobility and disability needs,we dont get extra money to spend on paying for two support staff to come with us into services like the cinema or an aquarium for example.

we have two support staff because we have high behavioral/support needs,its a NEED not a luxury, the second support staff isnt just coming along for a free ride,theyre there to work with us and keep us safe while accessing the community.
so why is it companies have great trouble recognising that disabled people often have more than one support staff?

yesterday,had gone to the cheshire game and country show in knutsford,cheshire and they said they woud accept one support staff in free but not two,if it hadnt been for dad being with us who was a paying customer woud not have been able to go in as needed to be supported by two people in there.

why cant service users with two support staff have their support staff show their work identity badges to show they are working or require a service user registration system so that we are flagged up on the system as needing two staff? knowsley safari park has a similar sort of system in place for those of us who have a lot of support staff so why cant other companies put something into place? we are paying customers after all and it isnt fair we are being isolated out of society.

Saturday, 16 August 2014

visit to knowsley safari park again; wild animal photos!

went to knowsley safari park near liverpool again today;am owner of a annual membership card there and can go as many times as want.

borrowed the iphone of one off the staff because tablet wasnt charged.
the baboons tore away at the car which was funny but staff were banging on the window telling them to get off,also telling them am going to end up paying for their damage when am trying to save up for a top of the range wheelchair,pretty funny as doubt the babboons understood that rant or cared about a wheelchair

anyway,heres the photos;
 a baboon with his?/her? nips out.

 camels sheltering from the heat,their bretheren and sisteren from afar woud laugh at them for finding english weather hard.

 some kind of deer? both enjoying basking in the sun.

 a mighty lion heading over to hump one of his mistresses, unfortunately spoiled by the reflection of a pets at home magazine on the dashboard.

 some type of deer again,beautiful spots.

 baby riding baboon,he is able to walk but kept diving on mamma.

 a toddler baboon who has obviously grown to big to ride daddy,but he didnt give up without a fight.

 tiny baboon baby,the support staff was pointing at the streak of baboon piss down the window.

 baboons just chillin, support staff in passenger seat kept trying to touch the paw through the glass even though it isnt ever going to happen, them bolton folk are strange.

 how cute is this little baby?

 we thought this baboon had been run over by one of the nobhead drivers who were busy speeding along,we banged on the window to try and get its attention,fortunately it got pissed off by the noise enough to look up slightly,huff at us and put his head back down again.

 we got mooned by a baboon while he was trying to rip off the rear wind screen wiper.
they managed to break plastic off the car and ran off with it as one of many trophies to put in their collection but got nothing else thankfuly.

Friday, 15 August 2014

swimming video

was at swimming today,special olympics isnt on in august so am renting out a private pool for some watery fun.
cant wait to go next week.

the 'r word' again

hey,its the old r word in the limelight again.
robins? rollercoasters? roosters? rhinos? roombas?
robbing bastards? rigormortis?
not quite.

its retard/retarded.
have been seeing it rear its ugly head on forums the world over in recent months,including on a disability forum;AKA wrong planet where most recently one user today instructed people to act silly but not to 'act retarded'.
in this useage,its not a direct insult but it ignorantly and offensively insults those of us who have intelectual disability by people relating us to childish behavior,we arent children,we are adult with adult brains and dont deserve to be what people think of when they want a representation of stupidity,we deserve the same basic respect as everyone else,and woud especialy expect more from people who also have disabilities and know what its like to experience prejudice,stigma and disablist ignorance and insults.

am sure the support staff of mine will say am anything but stupid when it comes to general computer problems and having a visual sat nav in brain which has got them out of trouble time and time again.
the only stupid thing is the way we are continuously believed to be children in adults bodies, compare people to computers;we are the ones who have a single processor;we have a limited capacity to process things which has a impact on our functioning, non intelectualy disabled people are those who have dual core or quad core processors,being a single processor unit doesnt make us worser people it just makes us more limited-we age and become adults the same way as everyone else,just because we arent functionaly adults doesnt mean we are stupid or adults with child brains.

stupid is using a group of people have got no understanding of as a comparison for something- especialy when negative.
stupid is using a disability to represent a behavior that can be found in even the most highly inteligent adult.
stupid is when people are ignorant of a group of highly vulnerable people and choose to tarnish them and their disability by association; on the internet,knowing the majority will not have the capacity or the equipment to argue their own view back at them.

Monday, 11 August 2014

some photos of a sting ray and poisonous frogs

was at blue planet aquraium on friday,and managed to get some photos with the tablet even though it was dark.

 sting ray photobombing

 frog stuck to glass,sleeping.

Friday, 8 August 2014

being LFA and against the idea of personaly having a 'cure'

am pretty disapointed.
it seems am completely ignored by parents whenever have wrote am against the idea of the whole concept of a autism cure on self;am not against others having the choice or a best interest decision by their specialists and profesionals made in their favour if they have no mental capacity to make the decision themselves.
they go on to write as if they havent even read the posts of mine when am often campaigning for our view to be heard, they say their child is LFA,that LFAs cannot state how 'they' feel and its not something that shoud be lived with and shoud be cured-as if theyre blanking the fact am a living breathing LFA posting in front of them,they dont want to take in opinions that differ to their own nor accept that some of us are actualy able to communicate well in text form.

people say they wish their son/daughter/people with LFA coud speak and tell them what theyre thinking but when one does they blank it out of their minds.
people are still using LFA as a throw back to meaning just profound autism and a description of someone with total lack of communication and the most complex severity of autism known to man,LFA is a spectrum just like HFA and we are affected very differently-the only thing we all share is that we all have some level of intelectual disability and this is what makes our autism present the way it does.
someone with extremely complex profound or severe autism will have severe intelectual disability on top,mine is mild so the severe autism appears differently to severely autistic people with much worse ID.

am completely against a cure of self,because have lived a life as a severely disabled person, have developed experiences and thoughts and interests based on the way am today, woud not be the same person or have the same strengths and qualities that have now if it wasnt for being this person.
am also acutely against the idea of change and woud never accept something that means change, and nor woud everyone else with severe or profound autism who have good support and specialist equipment tailored to their needs available to them,change to us is like a dog chasing a cat,we will run as fast as we can or we will stand there and fight it-we wont let it happen.

am feeling not good that am not able to be understood by many parents of severely autistic kids as always thought they woud be allies against the sea of ignorance and misunderstanding that recieve in the autistic community.
please parents;please prove this wrong and sympathise with what am saying.

am very sympathetic of parents,mine are still affected by the disabilities of mine even though have not lived there in many,many years,mum is severely depressed;something she developed when em was five years old and she wasnt able to cope any longer,her religeon disowned her and blamed her for having a child posessed by the devil,the doctors had said she had a severely disturbed child who needed punishing,including for the non verbalism.
yes it is very hard for parents to cope with our needs and difficulties especialy when they lack the support and knowledge,but we can have good quality of lives and improve greatly with the right medications,the right support staffing behind us,the right secure environment,the specialist equipment,supportive and encouraging therapies etc.

as adults away from the family home we tend to develop much better friendships with our families, had never recognised dad as 'dad' until a few years ago,still dont ever use it though apart from online.
am just wishing to be understood,it is hard to feel good when are misjudged by the autism community and the autistic community.