Explaining it a bit for all the folks on twitterHaving a bit of an interesting conversation on twitter that’s getting hard to do with only 140 characters. So I thought I’d do a break down of my reaction to Kate Winslet’s Golden Hat Foundation.
1) I am a touch jealous, because here is someone seemingly effortlessly set up a foundation to do just the good that many of us in the autism community have been struggling to do. Just a touch. Enough that I need to admit it, but not enough to blind me from the fact that yes, this woman has the connections and resources to make it happen.
2) A bit pissed off at the traces of martyr-parent of autistic child that I’m seeing in the mass media. This is compounded into RAGE over the fact that I have been discussing the rather disgusting fundraising depictions of autism that some orgs use, and ways to protest and ways to describe the depths of my feelings about it.
3) a bit worried. Oh yes, she has the potential to do fabulous things, and maybe the Autism Women’s Network can get in contact with her and we can do partnership things and get supports for under-diagnosed and under-supported autistic women and this will be AWESOMENESS. and I really really really really really really really really really really hope that this is the case. But I gotta keep myself grounded; there is the possibility, however far-fetched, that she might turn down the woo-trail and make more work for us self-advocates. So far, it looks like this isn’t the case, but the foundation has just begun, and sometimes weird stuff happens.
So no, I haven’t actually JUDGED Winslet yet (although I absolutely hated Titanic, but that’s not exactly her fault), although I have started picking through all the language on the website and I have faulted the media for its child-focused approach to autism. There are some pieces that are picking up the slack and including autistic adults, but we still have a long road to go.
Also, the fact that the only faults I can find on the site is that she lists Autism Speaks as a resource. But she also gains points by listing some very good research on autistic intelligence (done in Canada too, yay Canada!).
So as things go, nothing’s set yet, and I’m just waiting to see, and sprouting out my opinions online.
There you go, my opinion on the matter, so far. And of course, since it is an opinion, I have the right to change my mind at a later date. I expect that I'll be letting everyone know if I do.
Thanks for extending this.
ReplyDeleteI'd not heard of Winslet's Golden Hat effort.
It would be great if she got together with the Autism Women's Network, or some women from there met with her.
I'm ambivalent, too, although I've only just heard this headline, have done no indepth reading of it. But I am immediately concerned when I hear of a celebrity diving into autism and wonder - how much do they know? will they be led astray? how much are they influenced by someone else's bad ideas? Things like that. As you said, we'll just have to wait and see. 'Cause it may turn out very good.
ReplyDelete@Brenda, so far, there hasn't been any specific details of what the foundation is going to be doing, but considering that it seems that they plan to build community centers for autistic people, adults as well as children, I'm hopeful. Also, their list of research is also very hopeful.
ReplyDeleteBut yes, I share the same questions. A woman on twitter was telling me that I was being judgmental, that just because Winslet is a celebrity doesn't mean that she can't do good. And I'm like, "yes, but *you* also don't know for sure either. and I'm judging the media, not her!"
it was quite frustrating, because she wasn't LISTENING to what I was saying and was talking in circles.
This is an interesting topic. What do you all think would make it a good community?
ReplyDeleteThat is a pretty loaded question there, Anonymous person, that has quite a large range of different ways it can be taken, and different answers. Especially when there's not a lot of details out there, so I don't have a foundational base to work on. I also doubt I'll be in the position to make comments on the internal workings of it.
ReplyDeleteBut there are a few things that would put my worries to ease about the community centers:
1) for individuals, being able to have a say in what training, supports and programs they go through, to reach goals that they define.
2) for specific supports for female issues, separate from male issues, like support groups, and even some special interest groups. Because often it is forgotten that autistic females still have female issues than need to be addressed.
3) To have autistic persons from all over the autism spectrum to be in decision-making positions, as part of the Boards, being Advisors. It is our community, and the centers are to help us, so it makes sense that autistic people are involved to have a say in what goes on.
As for community building, I think a community that strides to reach understanding and works together to help one another with respect and honesty has the workings to become a strong, supportive community.
These are fabulous suggestions thank you for your input. I will pass it along to the planners and organizers of the Golden Hat Foundation. If you would like to give more input, please send us a comment through "Contact Us" on our website :)
ReplyDelete@ Anonymous, that is a good idea. I'm sure that other members of the Autism Women's Network (of which I am Director of Networking) would love to get in touch with the Golden Hat Foundation.
ReplyDeleteWe are very interested in all of your suggestions and comments. Hope to hear from you!
ReplyDeleteSo good of you "Anonymous" to lend a hand ...what other organizations have you been involved in?
ReplyDelete@Brenda & Corina:
ReplyDeleteYes, I think you have good reasons to worry a bit, until now it seems that many Autism organisations have been very wrong in their way of depicting autism and dealing with autistics without investing them into the project or even listening to them.
And the recents xears, most (if not all) of the celebrities who have joined an organisation about autism tended to do very bad choices (and some of them actively sent very bad messages).
So not being immediately enthusiast as soon as you hear that a celebrity will be invested in a new foundation about autism is a very understandable, and is also my reaction.
Because I have absolutely nothing against Kate Winslet... and would even tend to be very willing to trust her... but I prefer to wait and see.
But I would have tended to expect something very better from Jim Carrey before learning to what kind of society and idea he was affiliated! :( so you never know.
(my main expectation is that it will probably not be the best foundation ever... but still clearly and very better than the "Autism Speaks" kind)
But I really don't know...
Do you have already tried to write to them to explain them why linking to Autism Speaks was not a good idea, and very uncomfortable (at the very least) to many autistic people?
A tremendous amount depends on how open the organization is to input from autistic adults themselves, and to taking direction from that input.
ReplyDeleteA starting point might be: does the organization's leadership understand the distinction being made in this scenario:
Two houses side-by-side in a nice residential neighborhood. In each house, there live several autistic adults and a small number of live-in staff people.
The only difference is that in house #1, the staff people make the house rules and the decisions about anything communal or common. In house #2, the autistic residents make those rules and decisions, and the staff people's job is to provide the support needed to let that happen.
That distinction makes house #1 an institution (but not house #2).
If Kate Winslet and the Golden Hat Foundation leadership understand that, and seek to develop and support *non-institutional* living arrangements, they can do a *tremendous* amount of good. Kate's association with an organization doing the right thing can be a catalyst for educating other celebrities whose influence when they speak out or take a stand is great because of their celebrity. And more celebrities can be motivated to take a stand for doing the right thing by autistic people.