Thursday, January 31, 2008

Steak 'n Shake apology

"We believe in admitting when we make mistakes and learning from them."

I blogged about the lack of service that Karen received at the Steak 'n Shake drive-thru because of her deafness. You can read here about Karen's meeting with representatives with Steak 'n Shake.

If you read through Karen's posts on this incident (and the resulting comments), you can see just how many people have a hard time believing that this type of discrimination exists.

Inclusive Travel

If you've never checked out Scott Rains' blog, you are missing out. It's full of information, links, and stories about travel and disability.

Scott just found out that his proposal to create three Centers of Excellence in Inclusive Tourism in strategic locations around the world was accepted by the Echoing Green Foundation for the second of three rounds of the 2008 competition.

Here's what it involves:

"Each Center of Excellence will participate in international work to:

* Standardize the diversity of accessibility laws,
* Disseminate minimum accessibility guidelines for hotels,
* Train travel & hospitality industry staff,
* Promote the education & hiring of People with disabilities (PwDs) in the industry.

At the local level centers will work to make themselves accessible
destinations and establish a core of PwDs to be self-sustaining as advocates & experts in Inclusive Tourism for their region."

Congratulations, Scott! And, thank you.

Wednesday, January 30, 2008

Support the ADA Restoration Act

H.R. 3195 ADA Restoration Act was introduced in July, 2007 to "restore the intent and protections of the Americans with Disabilities Act of 1990." A hearing was held yesterday to discuss this bill.

This is critically important legislation, because lately more and more employees are being barred from protection by the ADA. You may remember this story about the pharmacist who was fired because of his diabetes. His employer, Walmart, denied him a 30 minute lunch break. Thirty minutes needed to eat his lunch and keep his blood sugar regulated. When the pharmacist sued, a judge threw out his lawsuit, because the judge did not consider him disabled since he took insulin and therefore deemed him not qualified for protection from the Americans with Disabilities Act.

Representative Steny Hoyer, who worked on the original bill in 1990 says that the Congress never intended to disqualify people from protection from discrimination because they were taking medication that improved their condition.

Employment is a huge, huge issue for people with disabilities. Without employment, how do we live independently, support ourselves, buy food and shelter, live a life? Without employment, we are relegated to relying on charity and government services, which just cannot be an economically sound way to run a country. Without employment, it's tough to share our perspectives, our talents.

Steve Kuusisto has a very informative analysis of the proposed modifications to the law. I urge you to read his entire post because it really clarifies the issues. He quotes Scott Lissner, a university ADA coordinator:

"This would clearly widen the scope of who is protected from discrimination (exclusionary practices and prejudicial practices resulting in differential treatment) but would not directly expand who is entitled to an accommodation. Though it is possible if fewer students, employees and program participants with disabilities are excluded there may be some increase in the accommodations provided.

The second critical change puts the ADA in sync with other civil rights legislation by moving from protecting only qualified individuals with disabilities from discrimination to protecting all individuals from disability based discrimination."

Here's what the American Civil Liberties Union's press release has to say about this important legislation:

The American Civil Liberties Union today applauded the House Committee on Education and Labor for holding a hearing on H.R. 3195, the Americans with Disabilities (ADA) Restoration Act.
The original ADA passed with overwhelming bipartisan support in 1990 and was heralded by Republican and Democratic leaders as the "emancipation proclamation" for people with disabilities. However, due to a series of Supreme Court decisions that have narrowed the definition of disability under the ADA, the vast majority of ADA cases brought against private employers have been dismissed by the courts.

The ADA Restoration Act restores the original intent of the ADA by clarifying that anyone with an impairment, regardless of his or her successful use of treatments to manage the impairment, is entitled to seek a reasonable accommodation in the workplace.

Specifically, this legislation:
amends the definition of disability so that individuals whom Congress originally intended to protect from discrimination are covered under the ADA;
prevents the courts from considering the use of treatment or other accommodations when deciding whether an individual qualifies for protection under the ADA; and
focuses on whether individuals can demonstrate they were treated less favorably on the basis of disability.

The following can be attributed to ACLU Legislative Counsel Joanne Lin: "It is time to fix the problems created by the Supreme Court. The ADA Restoration Act would reestablish Congress' original intent in passing the ADA and restore the Act to its place as one of our country's great civil rights laws."

There are 243 cosponsors of the ADA Restoration Act. But, there is considerable opposition. Some say that the ADA Restoration Act will allow everyone to claim a disability, encourage "cheaters", and the expense to business will be overwhelming. I don't buy it. As stated above, the ADA is being chipped away to not cover those who need it. And the reason is not concern that for cheaters. And, most accommodations cost very little to the employer, while adding greatly to the employer's bottom line to have a productive employee.

These statistics from a talk by attorney Howard Rosenblum of Equip for Equality, bear repeating:

20% of reasonable accommodations cost nothing.

Over 70% cost $500 or less.

The median cost is $250.

A company makes $35 for each $1 spent on reasonable accommodations. Some of the benefits include hiring and retaining a qualified employee, increased productivity, and decreased turnover costs.

Certainly a lunch break for the Walmart pharmacist is not a costly accommodation.

This bill has bipartisan support in the House, but Senate support is not clear. Please contact your Representatives and Senators to support this important civil rights legislation.

Regular updates on the progress of the ADA Restoration Act can be found at: The American Association of People with Disabilities blog and at Reunify Gally and The Road to Freedom.

Questions about cerebral palsy

I have been working on a post about my cerebral palsy. I haven't written so much about that topic because I had originally intended my blog to be about my interviews with people with disabilities and the societal issues of disability.

But, after reading Kathryn's recent post, and Billie's blog and Jacqui's blog and others, I think that maybe some information about how CP is for me could be helpful.

So, parents of young children with cerebral palsy, do you have a question you'd like me (or maybe my mom) to address about my CP now or when I was younger? If so, leave a comment here.

Friday, January 25, 2008

Costa Rica, anyone?

Mobility International USA's (MIUSA)Costa Rica Exchange Program Summer 2008

Last summer, I participated in an incredible program with Mobility International USA. (Here's my slideshow.) I joined several other young people interested in disability rights and traveled to Costa Rica - living with a host family, doing some volunteer work, visiting disability and tourist sites, meeting with Costa Rican disability activists, and sharing in a cross-cultural exchange. It was an intense, hard, wonderful, incredible experience. I met fascinating people and did things I'd never done before.

MIUSA is recruiting for this summer's trip. And, it's back to Costa Rica! If you or someone you know is 18 - 24 years old and interested in disability advocacy, be sure to apply. The deadline is March 28. All the details at the MIUSA website, including a great slideshow of our trip last summer.

Update on the Steak 'n Shake Discrimination

Yesterday, I linked to Karen's story of being denied service at her local Steak 'n Shake because she couldn't use the speaker box.

Here's an update: Karen says that she's received a response from Steak 'n Shake corporate headquarters and will be meeting with their representative. She is not looking for any remuneration (money or shakes!) - just an apology and appropriate customer service for patrons with disabilities.

Last night, the story was covered on ABC News and Fox News. I thought the coverage was good - not patronizing at all. Unfortunately, the videolinks are not captioned, so Karen and others who are deaf cannot hear the coverage via the computer.

It's good to see change happen.

Thursday, January 24, 2008

Carnival Day!

The 29th Disability Blog Carnival is up at RynTales. It's filled with thoughts on what health care providers, educators, waiters and others need to hear about their clients. Great stuff!

Another story illustrating why we need the ADA

Yesterday afternoon, Karen, who blogs at A Deaf Mom's Shares Her World, wanted to order shakes for herself and her son. Karen is deaf and cannot place a drive-thru order via the speaker. She needs a real person with whom she can lipread and speak. Doesn't sound too tough, does it? She drove up to the payment window at Steak and Shake to place her order, and was refused service, even threatened by the server with calling the police because she was "disrupting business."

Last summer, a woman with underdeveloped arms and hands who uses her feet to do the work of her hands, was refused service for herself and four children at McDonald's because the employee was disgusted when she gave him her credit card with her foot.

I've heard some people say that we don't really need the Americans with Disabilities Act because,

C'mon, people are reasonable.
Why get the government in the middle of it?
It will cause more trouble than it's worth.
And, again -
People are reasonable, we can work things out ourselves.
Nope. Not true.

Reasonable people will stop their car when the school bus stops in front of them to let kids off, even if the kids aren't crossing the street. But, we have a law. Why? For the safety of our children, and because, frankly, some people aren't so reasonable when they are in a rush or in a foul mood or just don't feel like stopping.

So many, many times when I try to do something - sing in a play, go on a school field trip, enter a restaurant, I hear,
We can't...
We don't....
You can't...
Sorry, it just won't work.
I know there's the ADA and all, but...
Go away.
The ADA is needed so that people can have shelter, work, shop for groceries and other necessities, get healthcare, take public transportation, etc, etc. Important daily functions, and recreation as well.

Incidently, money isn't really the issue here. As is so often the case, accommodations are not necessarily costly. They simply require a little thought, a little effort, or a little creativity.

A few suburbs over from the Karen's Steak and Shake is a Culver's Restaurant who, a few years ago, installed a bell at their drive-thru speaker.

"The customer pulls up and simply rings the bell...The staff now knows that the person out here is struggling with the speaker and then they pull forward and then they are handed a pen, paper and a to go menu."

(This accommodation and others similar to it are designed by a Chicago company, Inclusion Solutions.)

We need the ADA and we need the ADA Restoration Act to keep the teeth in the law.

We can't count on people being "reasonable".

Friday, January 18, 2008

More on the JRC and Aversives

Thanks to Andrea the hat tip on an update on the Judge Rotenberg Center and its use of aversives.

In December, the Boston Globe reported that a call was made in the middle of the night to the JRC and the staff was told to wake 2 boys up and administer shocks. Here's what is reported:

"The staffers, inexperienced and overworked, were described as concerned and reluctant, yet nobody verified the orders with central office, nor did anybody check treatment plans for the two teenagers to be sure they were permitted to receive that degree of shock therapy."


"In addition, the report said staff at the Stoughton house did not know who the shift supervisor was that night; the senior staffer did nothing to intervene. By the time a call was finally placed to the central office and staff members realized their mistake, one teenager had received 77 shocks, well in excess of what his treatment plan allowed, and the other received 29. One boy was taken to the hospital for treatment of two first-degree burns."
So, a prank call in the middle of the night resulted in the torment of 2 teens. Can you imagine?! (More discussion of that night over at The Gimp Parade.)

Today's news, reported in the Boston Globe, relates the investigation into this horrible incident. An investigator from the Disabled Persons Protection Commission viewed a videotape of the night (the JRC apparently regularly tapes the residents) and instructed the JRC to save the videotape for the state troopers. But, the tapes were destroyed.

"The disclosure about the tapes occurs as the Disabled Persons Protection Commission is preparing for a public release of its findings Tuesday. Its report concludes that one of the teenage students was severely physically and emotionally abused by the incident. The commission has referred the case to the Norfolk district attorney's office."

Tragic. Horrible. Incredible.

As Andrea says, one sees a connection between this loss of videotapes with waterboarding and Watergate.

Monday, January 14, 2008

Blogging Against Aversives

Is it OK to teach a child “appropriate behavior” with these types of punishment – ammonia sprayed up the nose, water shot in the face, forced to eat jalapeno peppers, or electric shock? You’d probably say NO WAY!

But what if the child has severe behavior problems, say swears excessively, bangs her head against the wall, bites himself or others, or is otherwise violent towards himself? How bad would a behavior have to be to warrant such violence towards the child? And who decides?

Some people advocate that there are children who are so difficult that they warrant these extreme consequences. Here’s a New York Times article from 1997 discussing one family’s experience with a school, now called the Judge Rotenberg Center, that administered the consequences listed above. Here is the 1999 obituary of the same young man, who, after his parents pulled him out of the school, later lived successfully with support in an independent living center, but died from infections resulting from harming himself.

A yearlong investigation of the Judge Rotenberg Center is documented in School of Shock: Inside the taxpayer-funded program that treats American kids like enemy combatants and is a must read. It has resulted in hearings to look into the school and the regulation of aversive conditioning.

So, back to the question – is it sometimes OK to do horrible things to children? If the situation is really dire? Is it OK to hurt a child if it stops a bigger hurt? I say no. We need resources, funding, research, respect and real support for these children and their families. Support and help that starts at a very young age.

Not violence. Never violence. There must a better way. These human beings deserve a better way.

For much more on this topic, check out the links at Uppity Disability.
Personal experience with aversive treatment from Amanda at Ballastexistenz. Heartwrenching to read. Thanks to Kay for the link.

UPDATE: I am turning off comments on this post. I do not have time to moderate a respectful discussion, and I do not want to risk having the comments deteriorate into meanness or nonsense that takes attention away from this serious issue.

Sunday, January 13, 2008

Brent Martin, Rest in Peace

Please read about the tragic murder of Brent Martin, a gentle young man in the U.K. bullied and beaten to death by three teenagers simply because of his disability. A hate crime that happened last August and is just making the news now. Why wasn't this a top story? Other hate crimes are reviled by all.

Some links: Adrien Pearson, The Journal. Two admit murdering Brent Martin for sport
Pipecleaner Dreams, RIP Brent Martin
Dave Hingsburger, Black Armband

Thursday, January 10, 2008

Carnival #28!

Photo description from Connie at [with]TV: woman, wearing glasses, reading the newspaper. Her mouth is wide-open as if yelling something; she appears to be appalled, offended, dumbfounded, angry - who knows - but it doesn't look good what ever it is.

Disability in the Media is the theme of the awesome carnival up now at [with]TV. Connie Kuusisto has put together an incredible collection of stories, reflections, videos on the subject - including the Ransom Notes campaign, a Nike ad, Oprah, Dr Phil, and a myriad of others. Much to see in the reflections and insights of so many bloggers. I hope you'll head on over.

Friday, January 04, 2008

"The Argument Against Lifeboats"

Steve Kuusisto of Planet of the Blind makes a very interesting comparison of the opposition to the Americans with Disabilities Act and the ADA Restoration Act with the problem of an inadequate number of lifeboats on the Titanic. Check it out!