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An Open Letter to Invision Power Services: Seriously, Why Autism Speaks?


Jessica Sideways

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To whom it may concern:

Do what thou wilt shall be the whole of the Law.

I am a customer with Invision Power Services and I am also an adult with Asperger's Syndrome, which is a form of High Functioning Autism. However, I was a bit flabbergasted when I read that IPS is supporting Autism Speaks financially. As someone affected by your decision to help raise money or donate to Autism Speaks, I hope you take this message seriously.

Autism Speaks is a pox upon the people it purports to serve. It threatens people who talk negatively about it with lawsuits (remember the whole Gator/Claria debacle? Autism Speaks is just as shameless.), advocating for "interventions" for autistic people, not greater understanding by neurotypical people, does not have a significant amount of people with autism in any sort of decision-making authority at Autism Speaks (yeah, so they have John Elder Robison for the time being... but he's not the only person with autism in the world), essentially advocating for the elimination and institutionalization of people with autism (rather than, you know, self-advocacy and independence) and spreading anti-autism sentiment.
To me, these things are jarring enough to make contributions to Autism Speaks as jarring as contributions to Aum Shinrikyo, the Church of Scientology or the various Minutemen groups that line the U.S.-Mexico border. However, I will assume good faith in this situation and I do not believe that the people in charge of this decision at IPS are actively trying to hurt people with autism. This is why I am writing this, to inform you and perhaps others about why Autism Speaks is not an organization you should support - if you want to help people with autism, that is. I hope that the people in charge at IPS will rethink their support of Autism Speaks and that they will not financially support this organization in the future. If not, I may have to rethink my support of IPS.
You can read more about Autism Speaks and the issues I've brought up at the following blogs:
Love is the Law, Love under Will.


Most sincerely,
Jessica Sideways
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Nice related post and I would have added my own commentary there, had I noticed it... but notice how right under that, there are several replies talking about why autism speaks is a liability, not an asset, for autistic people.

... However, it is also interesting looking through all those posts and seeing how all these NT people on the board don't give a hoot about the glaring problems that Autism Speaks perpetuates against people with autism. I don't know if you noticed it and are pointing me to this thread to show me the larger discussion on this topic... I don't know if you pointed it to me so I can see the response from the IPB Manager (probably likely, considering the anchor in the link takes me down to that point). To quote Phidassi on the thread you linked:

This does not make them bad people, and it certainly doesn't even mean they hold some of the worse views, but if no one stands up to say, "These things are actually negative, even though you had the best intentions" then they will carry on, with those best intentions, believing they are helping.

So yeah. Couldn't have put it better myself.

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  • Management

Yes you may think this charity is awful but others do not think so. Yes it may do bad things but it also does good things - that's probably true of any charity if you analyze them. There are people on IPS Staff who also are impacted by Autism either directly or indirectly. It is entirely inappropriate for you to making such sweeping judgements based on a single charity. As much as you claim you are being hurt your statements are also hurtful. I feel you are being very unfair and judgmental about a single item.

We had a goal of having a "Sponsored Charity" that we would rotate out every now and then. Autism Speaks was the first one we chose and we planned on switching to a new one soon.

I fear in my heart that we will have this same sort of blow up no matter what charity we choose. None are perfect. They all have waste, may support things that not everyone agrees with, or have other things that come up. I know i cannot stomach an attack on every charity we choose when we are honestly and truly just trying to do something good.

For those of you who have been with IPS for a time and know how we are: what should we do here? I will say I am not interested in putting it to a community vote as that has a whole other set of problems. While I really do want to promote charities on our sites I cannot think of way of doing it without instigating reactions from those with different views.

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When you say "community vote" Charles are you referring to if you should or should not support charity or if voting on which charity everytime it's time to rotate to support?

It's unfortunate that both will cause arguments and in the end only hurt those that are actually supported by these charities but you are running a business and it's sad to say that no matter how good your intentions now that this has come a little more into focus you may need to decide whats best for business.

In the end there will always be entitled, opinionated members or as I like to call them lobbyists :smile: that will start this fight. I guess you have to decide if it's a fight you're willing to take on.

I would also like to point out and this is in no way an accusation to Jessica but if you are a customer why are you not part of the customer group? I also notice that your site is not utilizing IPB products in any form. Why are you really here?

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  • Management

I meant I don't want to list like 5 charities and have the community vote. That has a whole other set of problems :smile:

I am having the charity program removed from the site for now. We will think of a better, less anger-prone way of doing good in the world. I feel our company and our client-community is fundamentally good and I don't want to just give up on spreading those good intentions around. At the same time it's really draining when topics like this come up :(

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Do what thou wilt shall be the whole of the Law.

Yes, but if we care to quantify it, Autism Speaks does more harm to a greater number of people.

Even if you let this topic remain on the board, it'll be buried by other things over time. However, the evil that Autism Speaks will continue to persist until people wake up and decide to stop contributing to it. It's not bad in that it merely misrepresents what it does (like a certain charity I remember back when I was living in Houston that purported to feed children... and did so with as little of the money contributed as possible while the rest of the money went to it's director) but that it is actively hurting autistic people.

Most of the people on this board won't care about this issue. I recognize that (after all, reading that previous post kinda showed that) and I think it takes knowing a person with autism and seeing how exactly this would negatively impact their lives that would get them to see what's wrong with Autism Speaks and donating to it. Hell, I have trouble with empathy and I see why donating to the ASPCA or the World Wildlife Foundation is different and more beneficial to the cause (in this example, animal rights and/or welfare) than donating to PETA.

Also, if more people on the IPS Staff were affected by this decision, why didn't more come up and defend it? On the other thread, there were only two comments by people at IPS and they were parents of people on the spectrum, not people with an ASD.

No, not all charities are perfect. I've served on the boards of some local charities and I can most certainly attest to that fact. However, "not perfect" and "a bane to the existence of the very people it purports to serve" are two very different things.

As for the entitled and opinionated comment... yes, I am. When I am paying money to a company for a product, I do expect that some of that money will be used in distasteful ways. However, to parade these things about much like Dan Cathy and the whole anti-gay broo hah hah at Hate Chicken 'R Us... I'm sorry, Chick-Fil-A - is pretty dark and shows a contempt for your customers.

All the same, I don't think that IPB shouldn't stop supporting charities, after all - this is a very good thing... but when you start supporting anti-social and downright disgusting "charities" like Autism Speaks, it turns to a very bad thing very quickly. Some perspective, some understanding and some google can make all the difference in the world. :) Or, as a friend of mine might say it "Check yourself, before you wreck yourself"

Love is the Law, Love under Will.

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  • Management

You're making sweeping statements about "most people here" and that no people posting in that topic have ASD. You are, put simply, totally and completely wrong. As I said in my previously reply your professions of being hurt can also cause hurt to others when you are not careful with your pronouncements.

Regardless though we have removed Autism Speaks from our forums here and it will be removed from the site too.

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