Donate Books to Great Ormond Street Hospital

Great Ormond Street Hospital is a children’s hospital in London. They accept gifts for the children who are in their care and find that often teenagers get forgotten when people send gifts. As well as books you could consider sending a stimming gift (like fidget spinners).

There are some guidelines for sending gifts:

-Do not send second hand books. All books must be new.

-Do not gift wrap items. Staff need to be able to match them to the children and teenagers.

Please send to:

Great Ormond Street Hospital Children’s Charity
40 Bernard Street
London
WC1N 1LE

Some suggestions of books you might want to send:

Queens of Geek by Jen Wilde http://www.jenmariewilde.com/books/

Geeks, Girls and Secret Identities by Mike Jung http://www.captainstupendous.wordpress.com

On the Edge of Gone by Corinne Duyvis http://www.corinneduyvis.net

This is Where it Ends by Marieke Nijkamp http://www.mariekenijkamp.com

The State of Grace by Rachael Lucas http://www.rachaellucas.com

Suzie Spins by Emma Dalmayne http://www.stasspublications.co.uk/publications/parents/susie-spins

The Someday Birds by Sally J Pla https://www.harpercollins.com/9780062445766/the-someday-birdS

I love being my own autistic self by Landon Bryce https://www.amazon.co.uk/Love-Being-Own-Autistic-Self/dp/0615731821

 

 

 

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Donate Books to Pelham Public Library

Pelham Public Library is a library in New Hampshire USA and they are looking specifically for Young Adult books by autistic authors.

Books can be sent to:

Kathryn Kania

Pelham Public Library

24 Village Green

Pelham

NH 03076

The libraries website is: pelhampubliclibrary.org

 

Some suggestions of books you might want to send:

Queens of Geek by Jen Wilde http://www.jenmariewilde.com/books/

Geeks, Girls and Secret Identities by Mike Jung http://www.captainstupendous.wordpress.com

On the Edge of Gone by Corinne Duyvis http://www.corinneduyvis.net

This is Where it Ends by Marieke Nijkamp http://www.mariekenijkamp.com

The State of Grace by Rachael Lucas http://www.rachaellucas.com

 

Autistic Books for Autistic People

This Autism Acceptance Month I want to do something positive. I want to get books by autistic authors to autistic people who are otherwise unlikely to be able to access them. Autistic people are over represented in hospitals (including psychiatric wards), prisons, substance misuse services, children’s homes and foster placements, and homeless shelters. Autistic people are also more likely to be living in poverty and unable to afford books.

I think that it’s important for autistic people to see ourselves represented in all kinds of fiction and for us to have access to non-fiction books written by autistic people. I also think it’s important to support autistic writers.

My idea is for the autistic communities, allies, publishers, book shops and anyone else who wants to support this project, to come together to get books to autistic people.

There are two parts to this. We need to get books and we need to find places to send them to where autistic people can access them.

Getting Books

If you are an individual who can afford to buy a book for an autistic person, I will be providing links to wish lists where you can buy a book that will be sent directly to people/organisations. I will make it clear who the wish list is for so if you specifically want to provide books to autistic people in prison or autistic children in hospital etc you can do so.

If you are a bookshop who would like to donate books by autistic people, I will promote your bookshops on Twitter. Please email me (see below).

If you are a writer or publisher who would like to donate copies of your own book please email me (see below). I will promote your book on Twitter.

If you are a business who would like to support this, again I will promote you on Twitter.

I will not be taking any cash donations and books will be going directly to the intended recipients.

Getting Books To Autistic People

I have contacted some organisations already about distributing the books but my contacts are limited and I want to get these books to as many people as possible.

I would really like to hear from people either working for or with connections to:

-Homeless shelters

-Refuges

-Hospitals/psychiatric wards

-Substance misuse services

-Children’s Homes

-Local Authority Virtual Schools

-Prisons

-Day Centres or homes for disabled adults

 

If you know of or are part of any other organisation that you think should be considered for this project, please let me know. I’m sure there are lots of places that would benefit that I haven’t thought of.

Rules

There will be guidelines for sending books. Different institutions have their own rules about what you can send to them and not following these rules will result in books not getting to the intended recipients.

No one will be given personal details of any vulnerable people. Books are being sent to institutions and organisations and not individuals to protect people. Many places (like refuges) will have their own safeguards to protect the people who use their services.

I will not be accepting any donations of money or anything other than books. Please do not ask people to donate money to you to buy books for this and please do not donate to anyone asking for donations for this (obviously you can get together with your friends and put money together if you can’t afford to buy a book).

Thank you to my patreon supporters

I had a patreon that I was using to raise money for something that unfortunately never manifested. I will be using the money that I raised through patreon to buy books for this project so I just want to thank all of the people who supported me on patreon and let them know that this is what their money is going on.

Contact

You can email me brookewinters3@gmail.com

Tweet me @BrookeWinters33

Or comment on this post.

How Pro-Vaxxers Harm Autistic People

Anti-vaxxers are harmful on many levels. They are harmful because they put people’s lives at risk by not getting their kids vaccinated and they are harmful because they spread the idea that being autistic is a bad thing. But pro-vaxxers can be pretty harmful to autistic people in the way they respond to anti-vaxxers.

If you respond to anti-vax arguments by pointing out their position kills people but don’t also point out that there’s nothing wrong with being autistic, you harm autistic people. Often non-autistic people reinforce the idea that being autistic is bad, it’s just not as bad as being dead. They reinforce this idea when they say things like “Better an autistic kid than a dead kid.” The implication there is that autism is bad but death is worse.

Of course there’s no actual link between vaccines and autism and there’s nothing wrong with saying so because it’s true. But when non-autistic people say “vaccines don’t cause autism” but don’t also say “and even if they did it wouldn’t matter because there’s nothing wrong with being autistic” again they reinforce the idea that autism is a bad thing. It’s often implied that vaccines don’t cause autism but if they did the non-autistic pro-vax person would re-evaluate their position. Some pro-vax people would change their mind about vaccinations if there was a link to autism and that’s ableist. Many of the people defending vaccination are just as ableist as those who believe that autism is a vaccine injury.

There is nothing wrong with being autistic. If vaccines caused autism that would be okay. Not only would they stop you from dying from preventable diseases, they would also make you autistic! That sounds like a win/win situation to me.

Learning Disability and Accessibility

Some notes on language
I use person first language for people with learning disabilities because my understanding is that most people with learning disabilities prefer PFL and my own preference for identity first language is irrelevant because I do not have a learning disability.
The people who attended the day centre are referred to as customers because this was the term the majority preferred.

Learning Disability and Accessibility
Back when I first became a social worker I worked with people with learning disabilities in a day centre. When I first started there we were based in two old Victorian houses that had been converted (and made accessible) in the suburbs. It was a lovely place and I feel happy when I remember it. It was very homely and many of the customers had been going there for decades. People were comfortable there. The problem was that it was so far from any community resources. There was a park close by but no café’s or shops or colleges. It was very much an institution and at the time we were trying to move away from institutionalisation. We (some of the staff and most of the customers) wanted to be part of the community. We wanted customers to be able to go out for coffee, get their hair done, go shopping, go to the theatre and do all of the things that most people take for granted. Some of the customers had ambitions that they hadn’t been able to work towards because of where we were based. They wanted to attend college courses and get jobs.

Many people take it for granted that if they are based on one side of a town they will be able to do something the other side of town but for many adults with learning disabilities this just isn’t possible. Many adults with learning disabilities require support to do things but may not have funding for one to one support. For most of the adults there would be one support worker for four people. So if you had only one person who wanted to attend a college course they couldn’t because the support worker was needed back at the centre. And even if you had four people who wanted to attend the college course most of the customers were wheelchair users and you can only have one wheelchair user on a bus. One of the biggest issues was lack of accessible toilets. Most of the customers needed changing places toilets (which are basically bigger toilets with hoists and adjustable benches) and back then there weren’t any in the city where I worked (and even now there are only three). This meant that the longest many of the customers could go out for was a couple of hours.

Management made the decision to move to the town centre. They found a great building and adapted it to make a base for the customers. There were still some activities going on in the day centre but for the most part it was just a base. Because we were closer to the college it was possible for one member of staff to accompany someone to college at 9AM and be back for 9.30 to support other customers in activities. Because we were so central it meant that customers could be spontaneous and decide to go out for lunch or do some shopping instead of having to plan these things a week in advance. It meant that we didn’t have to worry about an inaccessible transport system. We could go out for the day and come back quickly to use the accessible bathroom.

It was a good move for the customers and I think it’s right that day centres make the move to just being a community base for people with learning disabilities. But I also felt that in many ways we never really addressed the problems. We never addressed the fact that only one wheelchair user can get on the bus, or that the government funds the bare minimum amount of support that a person needs and this isn’t enough for many to live the lives they want, and even now there are less than 1,000 changing places toilets in the UK.

As a community we need to do so much more to make things more accessible to people with learning disabilities (and other disabled people too).
If you would like to support the changing places campaign you can find information here: http://www.changing-places.org/the_campaign.aspx

 

 

Of Course Person First Language Increases Stigma

Research has now shown that person first language increases stigma. I haven’t read the research. I don’t need researchers to tell me what I already know from personal experience. Although I have not read it, I am pleased that it exists. There are many abled people who won’t listen to disabled people but will consider what research tells us and if that is the only way to convince them not to call me a person with autism then I am pleased about that. In professional and academic settings this research will be useful and I hope that it helps us progress to a more anti-oppressive way of referring to disabled people. I think that the research is important and necessary.

I often talk to people who advocate for person first language. Some of them are people with disabilities and I respect their right to self-identify in any way they are comfortable but most of them are abled. The reasons they give are that we should “put the person before the diagnosis,” “see the person not their disability,” and remember that a disabled person is a person. Essentially they are saying that we must use this language in order to see disabled people as people and we must distance disabled people from their disabilities. These statements are in themselves pretty stigmatising.

“Put the person before the diagnosis.”
The use of the word diagnosis is always a concern to me because it erases the many people who do not have access to diagnosis. I have fibromyalgia and it took me years to get my diagnosis. I was still disabled before the diagnosis and no one questioned me being disabled because physically I could not do stuff. It was obvious that I was disabled. But for any neurodivergence there is always the issue of people not believing that someone is autistic/depressed/ADHD/(insert any other neurodivergence) unless they have a diagnosis. The emphasis on diagnosis automatically takes us away from the social model and puts us firmly within the medical model (and I don’t think there is any disagreement around the medical model being oppressive).

“See the person not their disability.”
This one brings up all kinds of issues for me. It reminds me of the abled people who will look everywhere except at a disabled person because they are uncomfortable seeing disability. Another issue I have with this statement is that you can’t see a person without seeing their disability. You can’t see me if you separate me from my autism because so much of me is influenced by being autistic. If you don’t see my physical disability how are you going to make sure that things are accessible for me? If you don’t see my disability you can cause me real physical and emotional harm. I have a friend who often leans on my shoulder when she comes to my desk at work and I have to remind her that it’s painful when she does that. She often tells me that she forgets. Essentially she does not see my disability and often hurts me as a result.

“A disabled person is a person.”
You only need to remind yourself that a disabled person is a person if you don’t see us as actually being people. The issue here is not in the language used but in the way that disabled people are viewed. We are viewed by many as being less than human. When I worked in a day centre people used to tell me that autistic people didn’t feel pain and that was less than a decade ago. When I advocate for identity first language, it’s not because I don’t believe that there are people who don’t see disabled people as people. I know that we are dehumanised by many, that we are seen as less than, inferior, unworthy. I know the way that many people see us and if you need to remind yourself that disabled people are people then you are probably one of the people who don’t see us as human.

I have always known that person first language increases stigma because the whole premise is stigmatising and a real challenge in disability is that these people who hold these awful views are the ones who are “advocating” for disabled people. People who advocate for person first language see disability as being inherently negative so of course it increases stigma. It’s a whole way of speaking based on the idea that being disabled is a bad thing.

Distancing someone from their diagnosis is only desirable if they are diagnosed with something bad. So of course you would want to say you had cancer rather than that you were cancerous. This is why I say that I have fibromyalgia, I have chronic pain, I have a chronic illness. These are conditions I want to distance myself from (which may not be the same for everyone with those conditions). When you apply that to things that I consider positive, like autism, or to my identity (disabled) then of course that increases stigma. I am a disabled person. I am a disabled person because I experience disablism, I am a disabled person because I am part of a community, I am a disabled person because I choose to identity that way and if you try to separate me from that then you are saying my identity is bad, my community is negative, and my experience of disablism is my own fault. Disabled identities are built on overcoming oppression and to strip me of that identity by telling me it is something I have, not something I am, disempowers me.

So of course person first language increases stigma. How could it not?