I never discuss my impairments. one, I don't like too and two it is against the social model of disability which I really agree with that it is society that disables us more than our impairments (how much more depends on how much you agree with the social model.
But then, something happens, and it all changes.
I read this.
http://www.dailymail.co.uk/news/article-2564731/Mother-tells-battered-bathroom-door-stop-daughter-12-suffered-seizures-drowning-bath-late.html
at the same time as reading about laughing boy and how his death was preventable if someone was watching over him in the bath. He had epilepsy and died in the "care" of the NHS. For more see here: http://mydaftlife.wordpress.com/the-report/
I sit here, feeling it. On a very personal level. and I can't be silent anymore.
I have non epileptic seizures. I have had these since I was around 15 years old. They are stress related and their severity and frequency fluctuate. It is the reason I get my DLA and my bus pass. I need 24 hour supervision and care, as these are unpredictable and can sometimes be nasty. (I don't often get this supervision and care but thats by the by).
I guess you could say I am lucky. I have only come close to injuring myself a few times and didn't quite break my hand at one point. But it still affects me, personally when I read about these things. There has to be an answer, surely?
There are many things I can't do safely because of my impairment. I don't let it disable me though because I find ways to work around it. It just makes me think that there has to be a safer way to have a bath for people like me, for people who its not really that safe.
In my old place I had a shower cubicle fitted. It meant that I could safely get clean (as in if i wasn't well enough to stand up then I couldn't shower). Here, I don't. So, usually I don't bath without supervision. It is safer.
But then, surely in todays world there should be a solution to this? A way to safely bath with privacy, dignity and safety in tact? I don't if we should look to the techy world or somewhere else but I know there has to be a solution to this somewhere.
I know we can't go back in time, but for the future, surely there has to be a better way?
(and if someone could invent me a car I can drive that'd be great)
Friday, 28 February 2014
Wednesday, 26 February 2014
some thoughts on the LB report
Please look at this twitter profile if you don't know of the hashtag #justiceforLB . https://twitter.com/JusticeforLB
It was in the news (local bbc news) yesterday that LB's death was preventable. http://www.bbc.co.uk/news/uk-england-oxfordshire-26334445 .
I haven't been able to stop thinking about this news since then. It has been going round and round in my head about so many different things related to this that I haven't made any comment and kept in the shadows. But then I think I have found what I want to say, and it was @bendygirls tweet this morning that reminded me and summed up what I wanted to say.
<blockquote class="twitter-tweet" lang="en"><p>Good to see media coverage starting <a href="https://twitter.com/search?q=%23JusticeForLB&src=hash">#JusticeForLB</a> but as ever, no-one with a learning disability has been asked to comment</p>— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/438612418944851969">February 26, 2014</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>
I have to be honest. I haven't read the report. I don't honestly think I could. I doubt many people with a label of learning difficulty/disability could either. It reminded me of the spartacus report, which for those who don't know was put into an easy read format by a charity. I think thats where I started reading it. I can't take in a lot of information, and certainly not a lot of technical speak. From what I have seen of the report on blogs it seems to be that the report into LB's death is far from user friendly.
I am not saying that it should be made into an easy read format (although the principal would be nice). I am commenting that there is a phrase resonating through bendygirls tweet and the report.
"nothing about us without us".
This phrase first started being used by the disability rights movement in the 1970s. Disabled people were fed up of their lives being dominated by the medical professionals and other organisations. It is an empowering statement, one that is still around today. Going back to the report "they" are discussing LB in an abstract sense. It is written by professionals for professionals. It is not written for the average person in the street to understand. Whilst I understand reports like this have a place I feel it is important to reclaim the humanity of LB after this report is published. He wasn't "a patient" or "a label" but a human being.
It frustrates me that reports exist that are inaccessible and unwieldy. I don't know what the answer is, but I know that if anyone is to actually learn anything and do anything about LB's death they need to include everyone affected in an equal and accessible way.
Going back to @bendygirls tweet, they wont ask anyone with a learning disability to comment because I doubt they could find anyone who would be able to read the report or have been allowed to participate on an equal level.
Edit and updated: YaY an easy read version. http://peoplefirstengland.blogspot.co.uk/2014/02/connor-sparrowhawk-report-easy-read.html?spref=tw
Also look here for other coverage on this: http://mydaftlife.wordpress.com/the-report/
It was in the news (local bbc news) yesterday that LB's death was preventable. http://www.bbc.co.uk/news/uk-england-oxfordshire-26334445 .
I haven't been able to stop thinking about this news since then. It has been going round and round in my head about so many different things related to this that I haven't made any comment and kept in the shadows. But then I think I have found what I want to say, and it was @bendygirls tweet this morning that reminded me and summed up what I wanted to say.
<blockquote class="twitter-tweet" lang="en"><p>Good to see media coverage starting <a href="https://twitter.com/search?q=%23JusticeForLB&src=hash">#JusticeForLB</a> but as ever, no-one with a learning disability has been asked to comment</p>— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/438612418944851969">February 26, 2014</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>
I have to be honest. I haven't read the report. I don't honestly think I could. I doubt many people with a label of learning difficulty/disability could either. It reminded me of the spartacus report, which for those who don't know was put into an easy read format by a charity. I think thats where I started reading it. I can't take in a lot of information, and certainly not a lot of technical speak. From what I have seen of the report on blogs it seems to be that the report into LB's death is far from user friendly.
I am not saying that it should be made into an easy read format (although the principal would be nice). I am commenting that there is a phrase resonating through bendygirls tweet and the report.
"nothing about us without us".
This phrase first started being used by the disability rights movement in the 1970s. Disabled people were fed up of their lives being dominated by the medical professionals and other organisations. It is an empowering statement, one that is still around today. Going back to the report "they" are discussing LB in an abstract sense. It is written by professionals for professionals. It is not written for the average person in the street to understand. Whilst I understand reports like this have a place I feel it is important to reclaim the humanity of LB after this report is published. He wasn't "a patient" or "a label" but a human being.
It frustrates me that reports exist that are inaccessible and unwieldy. I don't know what the answer is, but I know that if anyone is to actually learn anything and do anything about LB's death they need to include everyone affected in an equal and accessible way.
Going back to @bendygirls tweet, they wont ask anyone with a learning disability to comment because I doubt they could find anyone who would be able to read the report or have been allowed to participate on an equal level.
Edit and updated: YaY an easy read version. http://peoplefirstengland.blogspot.co.uk/2014/02/connor-sparrowhawk-report-easy-read.html?spref=tw
Also look here for other coverage on this: http://mydaftlife.wordpress.com/the-report/
Monday, 17 February 2014
representing invisible disability visually.
For a long time i have been very frustrated. the traditional symbol for disabled people doesn't include me. As it is a person sitting in a wheelchair it seems to suggest that you can only be properly disabled if you use a wheelchair. Its adoption and popularity in society perpetuates the myth and does further damage to us who are invisibly disabled. As a visual artist, the question of how can i visually represent something that is invisible? Got to me. Alot.
When something like this gets to me i have to do something about it. The shadowing of the wheelchair symbol against the man/woman was a slow but sudden process of serendipty and luck. I had been playing with shadows on photoshop and then it struck me.
I make no apology for the design, and as i didnt take any credit for it i love seeing it pop up in random and unexpected places.
However, when i seen this blog critising it i felt i had to respond as either the original or one of the designers of this image. http://thebodyisnotanapology.tumblr.com/post/76733350346/the-problem-with-person-first-language-whats-wrong
The idea of the shadow is that for people who have an invisible impairment it is hidden away, but still real and still has a disabling impact (in different ways) to the person. It is a reaction to the normal/abnormal and abled/disabled binaries that exist in our society. I have fought long and hard to be recognised as a disabled person, because to the world i look "normal".
It also ironically, seems to play into the gender binary of society. However, this is actually a clever reaction to societies definition. My initial reasoning for using the male female toilet symbol is a simple one. It is toilets. Disability is often portrayed as the third gender of the toilet world, with male, female and disabled being the options. You can't be more than one, you have to chose. The male/female symbol is as instantly recognisable as the disabled person symbol. Its why i picked it. It is a sad reflection of our society that these exist, but i decided to keep it simple and easily recognisable. It made a statement about gender, but one that is that gender considerations are so often omitted from disability (perhaps a skirt would get caught in the wheels?) and not intended to exclude differently gendered people from the equation. In fact it was trying to include more genders than the wheelchair symbol which in itself is pretty genderless.
I didn't want to make too many statements with the design. I wanted to keep it simple. If i were to design something around intersectionality i wouldnt just include gender, but race, religion and other aspects of a persons identity that can intersect with disability (answers on a postcard as to how i can do that).
It has been sucessful, because as i said i see it used everywhere. I don't have any control over its usage because i wanted to give it freedom to become whatever it was needed to be. I kept quiet about creating it because i dont think it should be owned, apart from by the person who uses it and interprets its meaning in their own way to help them explain their identity.
I can see how it can be interpreted as an attack on different genders though and i apolgise, it was merely meant as an attack on the symbolism of disability.
From a disabled person.
When something like this gets to me i have to do something about it. The shadowing of the wheelchair symbol against the man/woman was a slow but sudden process of serendipty and luck. I had been playing with shadows on photoshop and then it struck me.
I make no apology for the design, and as i didnt take any credit for it i love seeing it pop up in random and unexpected places.
However, when i seen this blog critising it i felt i had to respond as either the original or one of the designers of this image. http://thebodyisnotanapology.tumblr.com/post/76733350346/the-problem-with-person-first-language-whats-wrong
The idea of the shadow is that for people who have an invisible impairment it is hidden away, but still real and still has a disabling impact (in different ways) to the person. It is a reaction to the normal/abnormal and abled/disabled binaries that exist in our society. I have fought long and hard to be recognised as a disabled person, because to the world i look "normal".
It also ironically, seems to play into the gender binary of society. However, this is actually a clever reaction to societies definition. My initial reasoning for using the male female toilet symbol is a simple one. It is toilets. Disability is often portrayed as the third gender of the toilet world, with male, female and disabled being the options. You can't be more than one, you have to chose. The male/female symbol is as instantly recognisable as the disabled person symbol. Its why i picked it. It is a sad reflection of our society that these exist, but i decided to keep it simple and easily recognisable. It made a statement about gender, but one that is that gender considerations are so often omitted from disability (perhaps a skirt would get caught in the wheels?) and not intended to exclude differently gendered people from the equation. In fact it was trying to include more genders than the wheelchair symbol which in itself is pretty genderless.
I didn't want to make too many statements with the design. I wanted to keep it simple. If i were to design something around intersectionality i wouldnt just include gender, but race, religion and other aspects of a persons identity that can intersect with disability (answers on a postcard as to how i can do that).
It has been sucessful, because as i said i see it used everywhere. I don't have any control over its usage because i wanted to give it freedom to become whatever it was needed to be. I kept quiet about creating it because i dont think it should be owned, apart from by the person who uses it and interprets its meaning in their own way to help them explain their identity.
I can see how it can be interpreted as an attack on different genders though and i apolgise, it was merely meant as an attack on the symbolism of disability.
From a disabled person.
Sunday, 9 February 2014
Disabled peoples bus passes (in south yorkshire)
In south yorkshire disabled people could use their bus passes before 9:30am and on local trains and trams. We also have a with carer option for those on higher rate care DLA.
However, in a sneaky, we did a consultation its not our fault only 18 people responded type of way, this is all due to end in April. Well, kindly they have kept our with carer passes and we can use the trams too.
Older people will also be losing their train privileges and also could previously travel after 9am.
I hope I don't need to highlight the issues surrounding this. Disabled people will lose their ability to get to work, education, hospital and doctors appointments as well as leisure activities (we are allowed a life). For disabled workers (there are some) who regularly use the bus before 9am (or the train) it renders their passes useless as they would have to buy a weeks pass because of the relative costs. For those disabled people who cant use the bus but can only use the train (and in south yorkshire this could be because of the relative availability of each service, there are some areas where there are only regular trains not buses) it cuts them off completely.
Now the argument might be, well why can't we just pay up and shut up? Which would be all very well if you took the whole point of the bus pass away. The recognition that public transport is our only option, and it is our "car". We don't have a choice but to use it. It disables us by forcing us to pay. Obviously this increases for those of us with carer passes because we have to pay twice.
I am thinking about the people who I know who have spent months learning routes and becoming independent enough to travel by public transport to get to their day centre and will now have to re learn how to do this by paying in cash, if they can even handle money. If they can't, or they can't afford the extra cost then they will become isolated.
However, I wasn't happy with arguing it on cost grounds alone. So I did my research.
According to our local transports business plan the extra costs involved (and these include young people concessionary rates) is 2.66 millon pounds. (p23)
http://www.sypte.co.uk/uploadedFiles/Corporate/Plans_and_Strategies/5681_Business%20Plan_2013_DC_06.pdf
So, I wonder if there is a way to find out how many people have a bus pass in south yorkshire. These were my findings. According to the .gov website https://www.gov.uk/government/statistical-data-sets/buses-statistical-tables-index#bus-tables-index there were 228,977 older persons passes issued in the SYpte area. There were 33,385 disabled peoples passes issued. 33,638,769 journeys were made on these passes which averages to 128 journeys per pass per year.
There is only one authority (torbay) who offer the statutory minimum concession, and 63 LAs offer travel before 9:30am (out of 89).
If this 2.66 million pounds extra is divided up amongst disabled AND older peoples passes that is £9.90 a year. Thats of course not taking into account the child fare concessions included in this figure.
I was going to be personally writing to the local authority informing them that for an extra ten pounds a year I would like the option to travel before 9:30am. In the form of a bus pass or similar. I'd even be happy to pay 15 pounds for the year for the extra admin.
However, thats just not going to be good enough. I am going to start by writing a letter to as many local organisations who this change will affect (and have people in them who will be affected by them) with these statistics. I will be urging them to write to the transport authority alongside me. I'l even include a template letter to help.
The reason I am writing this blog is twofold. Firstly, if you are reading this from south yorkshire I ask to you join in and get writing to the transport authority with me. I'l have written the letter and template reply by the end of the week and will blog it, please message me if you want it (twitter @allbigideas or leave a comment here with an email address as I have to approve all comments before being visible so I'l read and delete). Secondly I want to urge to you to do the same in your areas, to work out costs and usage and to highlight how much extra per person before 9am travel would cost. I am sure the figure might surprise you.
Certainly in south yorkshire we have nothing to lose by trying.
(in detailed research links)
However, in a sneaky, we did a consultation its not our fault only 18 people responded type of way, this is all due to end in April. Well, kindly they have kept our with carer passes and we can use the trams too.
Older people will also be losing their train privileges and also could previously travel after 9am.
I hope I don't need to highlight the issues surrounding this. Disabled people will lose their ability to get to work, education, hospital and doctors appointments as well as leisure activities (we are allowed a life). For disabled workers (there are some) who regularly use the bus before 9am (or the train) it renders their passes useless as they would have to buy a weeks pass because of the relative costs. For those disabled people who cant use the bus but can only use the train (and in south yorkshire this could be because of the relative availability of each service, there are some areas where there are only regular trains not buses) it cuts them off completely.
Now the argument might be, well why can't we just pay up and shut up? Which would be all very well if you took the whole point of the bus pass away. The recognition that public transport is our only option, and it is our "car". We don't have a choice but to use it. It disables us by forcing us to pay. Obviously this increases for those of us with carer passes because we have to pay twice.
I am thinking about the people who I know who have spent months learning routes and becoming independent enough to travel by public transport to get to their day centre and will now have to re learn how to do this by paying in cash, if they can even handle money. If they can't, or they can't afford the extra cost then they will become isolated.
However, I wasn't happy with arguing it on cost grounds alone. So I did my research.
According to our local transports business plan the extra costs involved (and these include young people concessionary rates) is 2.66 millon pounds. (p23)
http://www.sypte.co.uk/uploadedFiles/Corporate/Plans_and_Strategies/5681_Business%20Plan_2013_DC_06.pdf
So, I wonder if there is a way to find out how many people have a bus pass in south yorkshire. These were my findings. According to the .gov website https://www.gov.uk/government/statistical-data-sets/buses-statistical-tables-index#bus-tables-index there were 228,977 older persons passes issued in the SYpte area. There were 33,385 disabled peoples passes issued. 33,638,769 journeys were made on these passes which averages to 128 journeys per pass per year.
There is only one authority (torbay) who offer the statutory minimum concession, and 63 LAs offer travel before 9:30am (out of 89).
If this 2.66 million pounds extra is divided up amongst disabled AND older peoples passes that is £9.90 a year. Thats of course not taking into account the child fare concessions included in this figure.
I was going to be personally writing to the local authority informing them that for an extra ten pounds a year I would like the option to travel before 9:30am. In the form of a bus pass or similar. I'd even be happy to pay 15 pounds for the year for the extra admin.
However, thats just not going to be good enough. I am going to start by writing a letter to as many local organisations who this change will affect (and have people in them who will be affected by them) with these statistics. I will be urging them to write to the transport authority alongside me. I'l even include a template letter to help.
The reason I am writing this blog is twofold. Firstly, if you are reading this from south yorkshire I ask to you join in and get writing to the transport authority with me. I'l have written the letter and template reply by the end of the week and will blog it, please message me if you want it (twitter @allbigideas or leave a comment here with an email address as I have to approve all comments before being visible so I'l read and delete). Secondly I want to urge to you to do the same in your areas, to work out costs and usage and to highlight how much extra per person before 9am travel would cost. I am sure the figure might surprise you.
Certainly in south yorkshire we have nothing to lose by trying.
(in detailed research links)
Table BUS0105
Table BUS0823
Older and disabled concessionary bus journeys by Travel
Concession Authority: England, annual from 2010/11 (MS Excel Spreadsheet,
90.5KB)
Table BUS0822
Older and disabled concessionary travel passes by Travel
Concession Authority: England, annual from 2010/11 (MS Excel Spreadsheet,
99.5KB)
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