Thursday, 24 June 2010

complaint for the week.

am getting really fed up with other people.

even though like the people in question alot,cannot understand how am able to know more about them about certain stuff.

to this person-am not even disabled and only have some issues here and there,because.... am not physically disabled [even though besides everything else-have got full todds paralysis,which happens after seizures,severe sensory overload and meltdowns],mentioned to them about the fact that DLA is our registry of proof for disability, proving are disabled if claim it,and they said only physical disabled people experience real disability problems.
next,pointed out the fact am on life/indefinite HRM/HRC [though dont get care due to being in residential, but that is still on award],is proof of the needs have got through severe disability,they then said that the residents am living with dont even get that as far as they know,and then said if anything-they shoud be getting the HRM/HRC and self shoud be on lower,as 'am very able',according to them.
am so fed up of people taking better understanding [than those that live with] and better awareness of self,as their 'proof' that am in need of less help,just because we are all different and some are more severe than others.

the same person also said [after was feeling shit from a tonic clonic yesterday,and today straight after having cut leg up badly during a pre seizure aura,and ticcing constantly]-that they arent even real seizures,as one of the other residents [kids] 'has it severe' and needs injections always ready,she then said she fainted once a while ago,and
asked if thought they were fainting instead?
right then.....the neurologists are just lying because am not as severe in seizures as others,that explains it,guess the fact am on the highest and max dose of tegretol retard doesnt explain how bad they can be then,and the fact they're not as effective anymore.

the same person also arranged a trip out next week,but said both other residents had to go to,after pointing out the obvious,that his screaming sets self off leading to a missed trip for self as well as a lot of damage to self,and that was really not comfortable traveling with him though like going out with the other resident often,they said was being selfish and by not agreeing to go with him am not letting him have the chance.
let someone know about this today as did not find that comfortable at all,to self it said they were seeing the severe noise difficulties have got as nothing,and easy to get over by choice.
have not got any problem with living with him,and think he is a very nice person,but being in a very small shut off area with him such as a car or minibus,when have got big problems with noise is impossible.
even if he doesnt scream,am still building up so much inside thinking hes going to do it any moment,that will be easily triggered by anything or ticcing alot,or missed out on a trip out.

they always say am getting out the most more than anyone as well, which may or may not be true but it always feels like am being made to feel as if stopping the resident that screams from getting out due to being unable to go out with him,and the other resident cant go out unless enough staff are on as he needs two to one all the time when out,am often asking for him to come along when possible as can get along with him easy,so do try to think of others as well.
it also doesnt help that the resident that screams,doesnt like going out,unless a reward is involved as hes not so much into the getting out side like self.

getting out actually helps self in many ways,it helps to distract head which am having a lot of problems with,due to seizure auras,a shit diet [that shoud read no diet,as am not eating as normal and not even able to take the ensures right now and it affects seizures,MH which do not have problems with normally and behavior]-getting out,and the sensory side to the movement of being in the car all helps self,and it also can help lessen chance of a seizure whereas the others at least are able to get out and go for walks or in the garden a lot more,am not able to go for walks and rarely able to go in the garden because of a nearby place that has noise as part of their job.

this probably sounds very selfish or being seen as very hard on self,but am just getting out what is in head as am so fed up of being misjudged all the time.
have been in the disability community for many years,and always try to understand a person instead of judging them badly or ignorantly where possible,so why is it people without disabilities who work with us can have less an understanding of disabilities than us?

disability is a huge spectrum,and covers so many different types,it also split into different meanings-there is social or medical.
a person with learning disabilities,developmental disabilities,mental illness disabilities etc,can have alot more disability than someone with basic physical disability-because non physical conditions are often difficult to adapt for and do not get the same acceptance under the DDA as physical impairment,with physical disability-it is often a lot clearer as there are so many aids that help with the physical side, and once using these aids-it can get rid of the disability though not always the discrimination they get.

now this isnt the end to this complaint,the person-though very nice and genuine,also is easily offended.
am constantly being lectured at for offending them,when have got no idea what they are on about,have had it a few times today already and am so fed up,am feeling like just not interacting with anyone at all-anymore,if it means everything am doing will offend.
a lot of this is even over echolalia that am not even aware of the meaning of-as that part is not processed to self,she thinks am making fun of her if copying,and the last time this happened today,was over blowing against arm so it made a farting sound,so got a lecture on how it offended her,but she then said she wants self to think of how others feel,and it didnt actually offend her it just coud offend someone?
am feeling extremely confused from all the offended lectures have had off her recently as have no idea what they are on about,as well as being judged as offensive,when woud never choose to be-unless someone is directly doing it to yeah,fuck this anyway,really dont have the mental energy right now for coping with this.

am so glad have got a keyworker who understands self more than anyone,doesnt just assume anything,and is really fair and unbiased unlike others who can take their views from others rather than fact.
not saying think aynone here are bad,but she is the only person here besides one other staff that feel able to speak to about anything, and get facts and unbiased views heard,-used to try with other people but instantly got judged as not being to able to have the differences or issues was saying,am already struggle to ask for help for different reasons related to having autism,but also struggle due to the past have had in residential care where was neglected as staff automatically said was lazy and not in need of the help due to being able to work a computer,and it makes it very very painful to actually ask for help as it always feels they will say the same if they are not able to even look past one side of self.
it means am more likely to struggle in silence to do something such as get boots off,instead of asking if someone coud just undoe them.
not that am bothered about actually having help,just being faced with
the same old ignorance.

really wish people coud see others as they are,and not judge on stupid bloody stereotypes,as most of us do not fit them.
thats it for now.

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