Culture and Happiness

I've been reading an interesting discussion on the blog A Grand Illusion, which began by asking what's wrong with wanting a cure if someone feels that they can't do what they want to do because of their autism. A commenter posted a snarky reply along the lines of "get over yourself, there are plenty of starving peasants living in huts who are much worse off than you." By way of rebuttal, the next few posts had to do with indigenous cultures and how happiness is perceived in different places across the world. Global surveys asking people to rate their level of happiness have shown that peasants living in dung huts in isolated villages feel significantly happier, on average, than the urban poor in wealthy countries.

Happiness, it seems, is more about cultural expectations than it is about material wealth in the abstract. When people feel that they have as much as the others in their society, they are happy; but when their culture dictates that they ought to have something else, they're likely to complain about whatever they don't have and to see themselves as unfairly deprived. People tend to take for granted many things that make their lives easier—such as electricity and running water—if everyone around them also has these things, and they don't feel happier because of having them. On the other hand, peasants who have never had such conveniences in their villages don't have any reason to think about it.

I would take this point even farther and say that it effectively answers not only the snarky commenter, but also the original question of why autistic people have different levels of satisfaction with their lives. There are some who feel like the urban poor in the surveys, believing that if they weren't autistic they could accomplish more in modern society. Others have an attitude more like the contented peasants, never having thought of themselves or their autistic family members as lacking anything in particular, and taking offense when those who don't share their perspective find fault with their way of life.

When people have different cultural expectations, arguing about how they ought to feel isn't likely to change anyone's point of view. As with any such differences between groups of people, it's often more useful simply to discuss what they feel without being overly judgmental about it, while working toward a more constructive mutual understanding.

Wishing a happy New Year to all!

Thank You, President Obama

When I endorsed Barack Obama's presidential candidacy on this blog in early 2007, it was because I judged him to be an enlightened and progressive thinker who would be capable of seeing the autistic population from a multicultural perspective—not as a plague to be fought and eradicated, but as a minority constituency made up of human beings and worthy of the same respect and representation as any other citizens.

I can't think of a time when I've been happier to learn that my first impression was accurate. President Obama made it clear that he is indeed a good friend of the autistic community when, as announced in this White House press release yesterday, he nominated Ari Ne'eman of the Autistic Self Advocacy Network to serve as a member of the National Council on Disability.

Here's an excerpt from the press release:


President Obama Announces More Key Administration Posts, 12/16/09

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

•Marie Collins Johns, Deputy Administrator, Small Business Administration
•Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
•Jonathan M. Young, Chair, National Council on Disability
•Carol Jean Reynolds, Member, National Council on Disability
•Fernando Torres-Gil, Member, National Council on Disability
•Chester Alonzo Finn, Member, National Council on Disability
•Gary Blumenthal, Member, National Council on Disability
•Sara Gelser, Member, National Council on Disability
•Ari Ne'eman, Member, National Council on Disability
•Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”


YEE-HAW!!!

Autism Speaks to Hurricane Victims: What, You Thought We Cared?

I'm reposting, in its entirety and with the author's permission, an e-mail from a New Orleans mom whose family lost their home to Hurricane Katrina. After seeing an Autism Speaks page that asked for donations to help families with autistic children who were homeless after the hurricane, she made the mistake of calling to ask for help and got nothing but grief.


Thank you for posting this information about Autism Speaks' impressive generosity . . . to its staff, bankers, and PR people. It doesn't surprise me that Autism Speaks shovels piles of money at their executives and their Park Avenue rent. In 2005, I personally found out just how eager they really are to help the families they claim to raise money for.

Our family was displaced by Hurricane Katrina and lost half of our household goods in the flood, including a car. We evacuated to New England, where we had some relatives, but we were otherwise completely isolated from everyone we knew. I searched online to try to find out what happened to a New Orleans friend, another parent of a child with autism. I was thrilled to find her mentioned on a page for "AutismCares," a project that Autism Speaks was asking people to donate to, so they could help families like ours who were homeless and trying to help our children with autism cope with all the upheaval. The website was featuring my friend, who was supposed to open a school for kids with autism, but Katrina hit the city on the day it was to open, and the school building was totally destroyed. Give to AutismCares, the site asked, so we can help deserving people like this.

I sent an e-mail to the contact person listed on the site, asking them to forward my contact information to my friend, so we could provide each other with emotional support. I also applied for some assistance because we were about to move back to New Orleans from Massachusetts. I spoke on the phone with an AutismCares woman who wanted to know exactly how much money we were requesting, and what it would be used for. She would have to be able to justify the expenses to her boss, she said, so she would need us to fax her an itemized estimate before they could even consider sending any funds.

We had to get a trailer hitch for our car because we were going to tow a small trailer with goods that family friends had donated, so that we could start over. We knew from many summer trips back and forth between New Orleans and the relatives' house that the drive would take 2 1/2 days (driving 8-10 hours a day), so we were hoping that AutismCares could help us pay for two motel nights--we're not talking about the Hilton, mind you. Comfort Inn, Quality Inn. All in all, we were only asking for about $300.

The AutismCARES woman I spoke to took the most uncaring tone of anyone I had dealt with so far, and I'm comparing her to FEMA operators and Red Cross operators, two other organizations that were supposed to help us, but didn't, despite hours spent on the phone and multiple calls. The AutismCARES lady implied that we had no right to be hauling anything across country. If we had so much stuff, we couldn't be that bad off. (The only reason we had any of these things was because it was donated; we sure didn't have the money to replace what we had lost. Even if we could afford it, very few stores were even open in New Orleans yet.) She questioned why we needed to stay two nights in hotels. When I explained that we had driven the route many times before and knew how long it took, she told me in an exasperated voice that SHE routinely drove from Philadelphia to Florida in 18 hours. When I said that with two young kids, one with autism, such long days weren't really an option. Well, she said, SHE made the PA - FL drive with two young kids AND a cat, AND she did ALL the driving.

At that point, I gave up. There was obviously no convincing this angry lunatic that we deserved any help. From her tone, she clearly thought we were just leeches. I had too many other things to do in order to move out from our temporary lodgings and prepare for a cross-country drive. I couldn't waste any more time begging for help from someone who wouldn't do anything for me but make me cry.

Only later, as we made the drive, did I realize how much shorter a trip from Philly to Florida would be, straight down the eastern seaboard. We were going diagonally across half the country. Just getting from eastern Massachusetts to the far side of New York City takes most of one day. Driving from Philadelphia, she didn't have to deal with New York at all.

Later still, after we were resettled in New Orleans, I finally tracked down my friend, who had also made it back. We had a great reunion, and I eventually asked her if the lovely people at AutismCares had ever forwarded my e-mail to her. She looked like she wanted to scream. No, they had not, she said, but that didn't surprise her. They had been using her story to promote their cause, panhandling for donations so they could help all the families displaced by Hurricanes Katrina and Rita, implying that they were going to provide her with a huge donation so she could re-establish the school she had worked so long and hard to open.

"They never gave me a cent!" she said. "Not a penny!" When it finally became apparent that they had no intention of helping her, she had to contact them repeatedly before they took her name and story off their website.

Autism Speaks. Appropriate name. They are ALL TALK when it comes to directly assisting the families they claim to care about so much.



While I was verifying the accuracy of the above statements, I contacted the friend whose school was destroyed. She told me that it is all true, that Autism Speaks used her story for promotional purposes without ever giving her any money for her school, and that it went beyond that...


I was opening a school for autistic children the day Katrina devastated New Orleans. Not only was the school totally destroyed but I lost my home and all of my personal possessions, as did my parents, aunt, and everyone in my neighborhood. We couldn't access money from the bank and had to figure out where we were going to go and what we were going to do. I discovered that Autism Speaks or Autism Cares was in the area helping families. I called one of the people who now works for Autism Speaks and lived in Baton Rouge at the time. She said they would provide me with money, clothing, etc. I have a family of 5 and we all had 2 days worth of clothing, which is normal when evacuating. When I gave her my cousin's address in a well established, safe neighborhood in Baton Rouge and she discovered it was a predominately African American neighborhood, she said she didn't go to neighborhoods like that...

My family of 5 and I were sponsored by a church and autism organization in Austin, Texas where we spent 15 months being displaced before we could return to New Orleans. I was told they would help with the school. Well, we received nothing. Once I returned to New Orleans to rebuild my home and the school, I contacted Autism Speaks which was much larger by then to see if there was any money for school equipment, etc. I was told to look on the website and see if there was any grant I was eligible for. Well, there wasn't. I never heard from them again and was pretty much brushed off. I don't know of anyone that money went to or organization here in New Orleans trying to make a difference.

There is more I can say but I think this answers your question. All I can say is that Autism Speaks, doesn't speak for me.

Holiday Cheer

Although I have a general rule of not endorsing products on this blog, I am making a one-time exception (for which I am not being paid in any way) to let my readers know about the beautiful handcrafted Christmas ornaments sold by Highland Roses Design.





Its founder, who blogs at Cheaper than Therapy, describes Highland Roses Design as "a collaborative craft studio to help market the creations of adults who have disabilities and their family caregivers in an effort to help them become more financially independent. If they aren't mobile or prefer to work in their own homes, we pick up and deliver the supplies to them. Every step of the process is a collaborative effort."

She mentions on the Highland Roses Design website that people who have mental illnesses or developmental disabilities sometimes do not qualify for disability assistance but are unable to work without accommodations in a traditional employment setting.

Of course, the Americans with Disabilities Act requires employers to provide reasonable accommodations to qualified workers who have disabilities, but in recent years many workers could not assert their legal rights because of lax enforcement by the Bush Administration and conservative court decisions that greatly narrowed the scope of the law's protections. Although things are changing for the better as a result of Congress' passage last year of amendments to the ADA and a new administration that actually seems to be listening to self-advocates' concerns, at present there are still many people with disabilities who are unemployed because of discrimination, and craft projects such as making holiday ornaments can help such individuals to gain work experience. If you are considering buying handcrafted ornaments this year, please check out the Highland Roses site.

Hard Times for Autism Speaks

It appears that Autism Speaks may be feeling the financial consequences of having chosen to use fear-mongering ads as a fundraising tactic, to fund research aimed at eradicating autistic people instead of giving families any meaningful help, and to exclude autistics from participation in its decision-making process. Due to budgetary constraints, all of its 2009 grants, including those already awarded, have been cut by 15 percent, with the exception of pilot and fellowship grants.

This hasn't been accompanied by a reduction of Autism Speaks' hefty executive salaries, however, as pointed out in a recent editorial by former walk organizer Cindy Waeltermann entitled Autism Speaks. It’s a Living. After reviewing the expense information on the IRS Form 990 on the Autism Speaks website, she wrote:


Now I ask you, does this look like an organization that is suffering? It looks, to me, to be an organization that cares more about highly paid salaries, posh offices on #2 Park Avenue in New York, pricey fundraisers and getting its name in the newspaper. They seem to exist solely to pay salaries and throw parties…

…Autism Speaks is gaining quite a reputation in the autism community. They come into a town near you with their sweeping public relations teams, hold their annual “walk for autism” dog and pony show, sucking every last dollar out of the community, only to take it back to those posh #2 Park Avenue offices. While it may seem like a noble cause, the main result of Autism Speaks’ tactics is that LOCAL organizations that actually HELP people in your very own community by providing services and supports end up begging for funding. How long are we, as an autism community, going to close our eyes to what’s really going on here? The big corporate New York “show” organization is going from town to town like an infestation of locusts sucking out every last dollar that they can in order to pay 68% of its income in salaries and overhead.


In advising her readers to just "walk off," she also mentions that Autism Speaks has been protested and picketed by autistic adults and that it has been widely condemned for its spending, its scare tactics, and its treatment of autistic people.

I'll add to her observations that according to Autism Speaks' annual report, only 4% of its grants went toward family services anyway, even before the budget reductions. It was only a matter of time before parents started to realize that they had been duped. No organization can get away with a greedy scheme like that for very long.

But hate speech is free, unfortunately, so we're not likely to see any cutbacks there.