A Darker Side of Twittering
September 23, 2009
Social media sites like Twitter have a fantastic capacity to serve a greater cause and influence thinking (read my previous post here). Twitter has proved to be a great equalizer, giving celebrity and commoner alike the opportunity to share in 140-characters or less their personal thoughts and insights to a global audience.
While Twitter is, for the most part, a vehicle for positive self expression, there are times it exposes with ruthless aplomb and probity the biases that fester in our social conscience.
We’ve come far, even over the last decade, in fostering greater compassion and acceptance for those with disabilities. Yet, it is clear we have so much further to go. The following are actual Twitter updates I have noted over the last several months.
- “think about it. The impotency of the sperm and egg, means a world full of kids with down syndrome, 3 hands, and 7 eyes. Half-robots…”
- “im kooler than that stupid down syndrome lookin kid “
- “he has down syndrome though…that’s what makes it so funny”
- “Just saw a lady with a vest with down syndrome on it, bad enough she has the disease but does she really need to advertise it?”
- “he’s not ashamed that he loved Twilight. It was hilarious and so much fun. Its like watching a kid with down syndrome run into a wall”
- “I am far from fugly u down syndrome extra chromosome lookin ass”
- “Im sitting at the mall cracking up like a retard. LOL”
National Down Syndrome Congress Point-of-View paper on health care reform and its impact on individuals and families living with Down
syndrome.
Lost in all the rancor over health care reform, is the fact that there is federal legislation pending in Congress that would support, assist, and recognize individuals with Down syndrome and other disabilities. Though near-term resolution to any of these bills is unlikely unless done through the framework of health care reform, here is a run down of current federal legislation that you should, at the very least, familiarize yourself with as they relate to DS individuals and families.
S.1810, Prenatally and Postnatally Diagnosed Conditions Awareness Act
Although signed into law by President Bush in October 2008, the law is worth bearing out here because it still lacks awareness among many in the larger DS community. More commonly known as the Kennedy-Brownback Bill (after the bill’s sponsors, Senators Ted Kennedy and Sam Brownback), this law strengthens the informed consent process around prenatal testing, and provides information and support services to parents receiving a positive diagnosis for Down syndrome or other genetic disorders. The law also creates a national clearinghouse of information for parents of children with disabilities, increases funding for peer-support groups, creates a national registry of families wishing to adopt children with disabilities, and develops education programs to help train health care providers in providing more balanced information and outcomes regarding the prenatal or post-natal diagnosis (read more here).S.493, The Achieving a Better Life Experience (ABLE) Act of 2009
Achieving a Better Life Experience Act of 2009 or the ABLE Act of 2009 – Amends the Internal Revenue Code to establish tax-exempt ABLE accounts for individuals with a disability to pay certain expenses, including expenses for education, housing, transportation, employment support, medical care, and certain life necessities. The bill also allows individual taxpayers a tax deduction, up to $2,000 per year, for contributions to an ABLE account (read more here).S.3297: Advancing America’s Priorities Act
In part, the bill provides for support services to women suffering from postpartum depression and who receive a positive diagnosis of Down syndrome or other prenatally or postnatally diagnosed conditions (read more here).S.CON.RES.22
A concurrent resolution expressing the sense of the Congress that the Citizens’ Stamp Advisory Committee should recommend to the Postmaster General that a commemorative postage stamp be issued to promote public awareness of Down syndrome (read more here).NDSC POV on Health Care Reform
Not a bill, but here is the National Down Syndrome Congress’ Point-of-View paper on health care reform and its impact on individuals and families living with Down syndrome (read more here).
Should Sarah Palin Answer the Call?
July 25, 2009
In a recent column in the Washington Post, Special Olympics Chairman & CEO, Timothy Shriver, wrote elegantly on how Sarah Palin is eminently qualified as a civil rights leader for people with intellectual disabilities (read his column here). Shriver wrote that “parents with Down syndrome struggle against the stings of prejudice and fear while seeking acceptance for their children. There are precious few champions for this cause.”
Moreover, Shriver wrote that “The struggle of people with intellectual disabilities is an authentic civil rights movement, one in which Palin carries powerful credentials. Her infant son Trig has Down syndrome.”
Shriver’s gravitas is unparalleled when it comes to the cause of special needs. And his mother, Eunice Kennedy Shriver, is largely credited for founding and developing Special Olympics into the worldwide organization and movement that it is today.
Shriver speaks honestly and without agenda on his hope that Palin would become a champion for Down syndrome and the intellectually disabled. Yet, I fear his encouragement for Palin will fall on deaf ears of the many who continue to attack, mock and scorn her (read my previous post here). The following is just a sample of reader responses posted to Shriver’s column:
Frankly, I tend to think the only advocacy Palin’s managed to do is to use Downs Syndrome kids to show some ‘pro-life’ extremist credentials.
I’m not saying she necessarily *doesn’t* actually care, though it seems it’d be out of character for her mean-spirited smirking ignorance and general bigotry, but there’s probably more to work with there than any presumption of political, ethical, or intellectual competence in government.
In politics, she’s the very picture of everything that’s wrong and corrupt about the Religious Right.
I agree with Shriver that Palin, however controversial, could bring sorely needed attention and awareness to the cause of Down syndrome. The absence of a champion, coupled with the anemic efficacy of the national groups and the non-existence of unified state-level organizations, has, in my opinion, contributed to the lack of real gains for our cause.
In fact, it would seem we’re actually losing ground as evidenced by the loss of approximately $6M in NIH research funding for Down syndrome since 2003. This isn’t funding that was eliminated from budgets because of a sliding economy, but precious research dollars that were reallocated toward other disease states and health conditions.
Down syndrome is in need of a leader to unite the cause, and Palin’s passion and personal experience with DS would serve this well. My hope is that she seriously considers answering this call not for political posturing but for the benefit and future of her son Trig and all children like him.
New Book to Tell Father’s Side of Down Syndrome
July 14, 2009
Anyone with a child with Down syndrome has likely read the book “Gifts” edited by Kathryn Soper and Martha Sears. The book is a compilation of stories written by mothers of children with Down syndrome, and on how having their child enriched their lives.
Interestingly, no one to date has published a similar collection of stories written from the father’s perspective; something that Down syndrome dad, Mike Burgess, is looking to change.
Burgess’ book, tentatively titled Brand New Man: Reflections on Fatherhood and Down Syndrome, is still in development. But Burgess is actively looking for DS fathers interested in writing their stories so that new DS fathers facing the unknown may find a sense of peace.
Yes, fathers may approach the issue of Down syndrome differently than mothers, but it doesn’t make their stories and insights any less inspiring or interesting.
DS fathers interested in sharing their story can email Mike Burgess at burgeo2c@duke.edu.
Hate Lives On…
July 4, 2009
However you feel about her politics, Sarah Palin became the first vice presidential candidate in U.S. history to declare special needs advocacy as part of an official national campaign platform. But her public advocacy for her DS son, Trig, has made her the target of ceaseless derision and mockery. Witness the following article posted on the Huffington Post just hours after Palin announced her resignation as governor of Alaska. The article is not only an attack on Palin but on all people DS.
As far as we’ve come in the treatment and acceptance of people with DS over the last 20 years, hate does live on. Thanks to Patricia Bauer at Disability News for posting the article in its entirety.
“Palin Will Run in ‘12 on More Retardation Platform
By Erik Sean Nelson“In Sarah Palin’s resignation announcement she complained about the treatment of her son Trig who always teaches her life lessons. She said that the “world needs more Trigs, not fewer.” That’s a presidential campaign promise we can all get behind. She will be the first politician to actually try to increase the population of retarded people. To me, it’s kinda like saying the world needs more cancer patients because they teach us such personal lessons.
“Her first act as President: To introduce a Pre-K lunch buffet that includes lead paint chips. Sort of a Large HEAD-START Program.
“She will then encourage women to hold off on pregnancies until their 40’s just to mix up some chromosomes.
“She now is in favor of abortion only in case of diploid birth.
“Her policies will increase jobs because Wal-Mart is building new stores each day and someone has to be the greeter.
“This will lead to smaller government because fewer Americans will have the cognitive ability to hold a government job.
“Look, she says she’s resigning as governor because people are making attacks on her and Trig. If she ever did become president, all Osama bin Laden would have to do to defeat the United States is Photoshop a picture of Trig and she’d surrender the country that night. As she said, “That’s not politics as usual.” It isn’t. Politicians don’t usually quit for so stupid of reasons.”
The Accidental Advocate 
