'You just don't look disabled'

New York (CNN) — People come up to Aimee Mullins all the time and say, “you know, I have to tell you, you just don’t look disabled.”

The record-setting athlete, actress and model says, “And it’s sweet because I know that they’re confused, and they’re telling me this because they know I’m missing both legs from the shin down, but they’re presented with this package of a highly capable young woman. This has happened all over the world. I tell them it’s interesting because I don’t feel disabled.”

She believes that people are not born disabled. “It’s society that disables an individual by not investing in enough creativity to allow for someone to show us the quality that makes them rare and valuable and capable.”

Mullins was born without fibula bones and was expected to use a wheelchair to get around. Her legs were amputated below the knees when she was a year old. She learned to walk, bike, swim and play sports using prosthetics.

While a student at Georgetown University, she competed in the NCAA Division I, using pioneering carbon-fiber prosthetic devices designed to imitate the hind legs of a cheetah. At the Paralympics in 1996, she set world records in several track events, drawing attention that landed her on magazine covers and in one media “best of” list after another.

2010 Paralympic Winter Games begin Friday in Vancouver

Mullins was featured in a 1999 show by the late fashion designer Alexander McQueen and has gone on to a career as an actress. In an interview with CNN.com, she said she’s beginning work on a screenplay about the life of scientist Rosalind Franklin, whose discoveries helped lead to the unlocking of the structure of DNA.

In a talk at last year’s TED MED conference in San Diego, Mullins explored the concept of disability and talked about how overcoming adversity is something everyone must confront, in one way or another. [TED is a nonprofit that distributes talks on a wide variety of subjects at http://www.ted.com/; TED MED is a separate organization that licenses the TED logo and focuses on medical and health care related issues.]

Mullins spoke to CNN Monday. Here’s an edited transcript:

CNN: You spoke at the TED MED conference about the negative connotations of the term “disabled.” How important is it that we get the language right?

Aimee Mullins: It’s not so much the word itself. The idea of being politically correct is not the goal here. It’s how we use the word very casually as a label to try to encompass somebody’s value to our community and the worth of their contribution to our community. That’s what we need to get right.

I’ve had so many letters from parents or medical professionals who will say, I didn’t even think about how casually I’ll tell someone oh, I have a disabled child. It never even occurred to them that if they really stop to think about it, their child may have a specific medical condition that can be defined as paralysis or autism or being an amputee. …it’s how we use words and how they shape what we think about difference and other people in our community.

CNN: In your own life, how significant have these kinds of words been?

Mullins: Well for me I never ever felt the ownership or any identity with any community of disabilities. I didn’t grow up being told that I was a disabled child. After the ’96 games, and I was competing in Division I track at Georgetown and I was starting to get mainstream press … where I’d be on the cover of a magazine that was heralding my speed and athletic prowess and it would say, “Disabled athlete Aimee Mullins runs faster than most people on the planet with flesh and bone legs.” And I thought how does a journalist miss that, and just casually write “disabled athlete.”

I’ve had journalists asking me what do we call you — is it handicapped , are you disabled, physically challenged? I said well hopefully you could just call me Aimee. But if you have to describe it, I’m a bilateral below the knee amputee.

Ten years later, watching Oscar Pistorius go through many of the same issues I had 10-12 years ago, I realized that our language just hasn’t caught up with the opportunities technology is providing for people…

I feel like today there’s a different sense, so much more widespread, of people feeling like they don’t want to be negated, they don’t want to be marginalized, they want to make their own definitions of their identity. They want to identify themselves.

CNN: You have said that there’s a stigma relating to differences between people. Do you think, just setting the word aside, is there still a stigma relating to physical limitations such as being an amputee?

Mullins: There’s much, much less of a stigma here. It’s my own personal experience that parents of children today who are amputees have an entirely different view. I think a lot of this is because of the Internet. They have so much more access to information and to learn about what prosthetics are out there. And a sense of sheer numbers, to learn that you’re not alone. …

I’ve been in developing countries where being an amputee and indeed having any kind of physical or intellectual or emotional disability is highly stigmatized. I was in Kibera [in Nairobi, Kenya], one of the largest slums in the world, last fall, and mothers of babies born with club feet are encouraged to abandon these children. If the babies are born with Down Syndrome, they’re encouraged to abandon them.

If the mother doesn’t actually abandon the child, the child is kept in a backroom in a shack and literally does not see the light of day. And the child is not even counted. When I asked a mother how many children she had, she told me she had three, but there were four. I was sitting in their living room and her three year old had been born with his head enlarged and the rest of his body wasn’t developing at the same rate.

I had a really disturbing message from a doctor who was at TED MED and heard me speak and went to Haiti immediately after the earthquake — he’s an anesthesiologist. And he said, we have to talk because I have so many patients down here who are choosing death over amputation.

And so I’m sure that part of the social stigma in a developing country when employment and work are already scarce, it’s hard for people to imagine how they could support their family financially with a different body.

CNN: How does technology play into this and how is it changing the lives of amputees?

Mullins: Technology’s a huge factor. There had been a real dearth of technological advancement since the last world war. …

I grew up as a teenager having this wonderful naivete about, well I can go see something that James Cameron dreamt up and [Oscar-winning visual effects designer] Stan Winston built it. Why can’t I have that for my body? Or I would go into Madame Tussaud’s wax museum and see the kind of artistry was done there for a leg. Why can’t I combine that with Stan Winston’s doing?

Watch James Cameron’s talk at TED2010

It was a very lonely voice echoing in the wilderness… And I really think because of the two wars we are in right now and because of the fact that we have so many young men and women in this situation, it’s unthinkable that we’re willing to make a 19-year old irrelevant by not giving them their capabilities. And that’s why you’re seeing so many leaps in progress.

Again with the growth of the Internet, so many more people are saying I found some designer in Silicon Valley who’s using a 3-D printer to create a model of a prosthetic leg and customize it and print it out. There is that sense of possibility that’s been so expanded because of technology and because so many more people have accepted this invitation to come into the conversation. I’ve had fashion designers, graphic designers, and communication designers, people who don’t have engineering backgrounds, who don’t have medical backgrounds, who are very intrigued by the idea of creating prosthetics for assistive devices…

The idea of prosthetics is a tool. Most people’s cell phones are prosthetics. If you leave your cell phone at home, you feel impacted by not having it. It’s an important part of your daily function and what you can do in a day.

CNN: How much of your own time do you devote to raising awareness about these issues?

Mullins: I’m not an advocate for disability issues. Human issues are what interest me. You can’t possibly speak for a diverse group of people. I don’t know what it’s like to be an arm amputee, or have even one flesh-and-bone leg, or to have cerebral palsy.

I don’t speak for such huge and diverse groups. What I’ve tried to do, what I’ve been fortunate to do, is to live my live and create my life as I’ve wanted to create it. To be able to live with such an autonomy has itself raised awareness.

Reference Link
http://www.cnn.com/2010/OPINION/03/09/mullins.beyond.disability/index.html?hpt=Mid

Courtesy
CNN

Wipro role lauded

BANGALORE, India: Reflecting on general trends that were thrown up during the five-day placement process, placement in-charge P.D. Jose noted that companies this year came forward to recruit students with physical disabilities.

Notably among the IT firms, Wipro sought applications from such students. “They were very proactive. I believe that such facets about big companies must be highlighted and given due appreciation,” Mr. Jose said.

Reference Link
http://www.hindu.com/2010/03/10/stories/2010031061170300.htm

Courtesy
The Hindu

Warangal doctor turns saviour of girl, mother

Dr. Anjani Devi steps in to end the agony of a physically and mentally-challenged girl and her mother

---

WARANGAL, India: Can being alive be a problem for anybody? For 22-year-old P Samatha, a physically and mentally-challenged girl, life was not just a problem but an unending ordeal. Her mother Puspha’s life was all the more distressing as her daughter had to be completely dependent on her virtually for everything. “She does not know when it is time for natural calls.

Her menstrual periods are erratic and I am vexed. She too pleads with us to put an end to this torture,” Pushpa said wailing.

Ms Puspha and her husband Kanakaiah went around hospitals pleading with doctors to perform hysterectomy on their daughter to relieve her from her agony. However, the doctors refused to do so and advised them to get her married. Relating her woes, Ms Puspha said it was practically impossible to perform her daughter’s marriage.

They approached noted gynaecologist P Anjani Devi of Kalyani Hospital, Hanamkonda, who too was reluctant to perform the operation. However, after listening patiently to the girl’s mother and the torture she was forced to face frequently, the doctor, after completing legal formalities, finally saved the mother and the daughter.

Favouring a debate on the issue, Dr. Anjani Devi said that of the 13 lakh physically-challenged persons in the State, the mentally challenged constitute about 3 lakh of which women in different age group constitute 50 per cent.

“There are hostels and schools for physically-challenged persons, but not for the mentally-challenged. “The government restrains from performing hysterectomy on unmarried girls, but cases such as these need special consideration,” she argued.

Reference Link
http://www.hindu.com/2010/03/10/stories/2010031059300400.htm

Courtesy
The Hindu

“Getting teachers to consider scientific practices in special education a challenge”

The best interventions are those provided early, says expert — Photo. R. Ragu

Exchange of ideas:Jill Dardig and William Heward, international experts in special education, in Chennai on Monday.

CHENNAI, India: The effort to get teachers from all areas into special education to consider and turn to science-based and evidence-based practices is very much a challenge, William Heward and Jill Dardig, international experts in special education, say.

Special education has always been a field that has attracted a lot of miracle cures/fads and promises primarily because parents are desperate for help for their child, Dr. Heward, Professor Emeritus of Education at Ohio State University, Ohio, U.S. adds.

“The challenge is to get teachers to consider scientific practices – we have not figured how to do that.” In a country like India, with a great deal of traditional knowledge and reliance on alternative systems, it does seem a greater challenge, he explains.

Best practices

In Chennai to participate in Learn 2010, Dr. Heward and Dr. Hardig, who is Professor Emerita at the Ohio Dominican University in Columbus, Ohio, also visited two schools – The Open School and The Learning Centre – run by Sankalp, an NGO working with children with learning disabilities and Autism Spectrum Disorders (ASD).

“We were amazed by the incredible use of limited space and resources for the number of children they are serving; they have staff who are unquestionably devoted to the children. What you see is a complete range of efforts to intervene, some of which we would instantly consider as best practices that we would recommend,” he says.

Both of them set store by the value of Applied Behaviour Analysis as an intervention that helps optimal development of children with ASD. There is evidence that this method works for a vast majority of children, especially in terms of language/social skills.

As people who have been in the special education sector for many decades, they have noticed a big increase in awareness about ASD globally. In the U.S., it was in the mid 1990s that officially autism came to exist as a disability category under which a child could receive special education services.

Before that, many of those children were picked up under other disabilities – mental retardation, behavioural disorders. Initially Autism was looked at as being a situation caused by mothers – children feel rejected by the mother, so they go internal and withdraw. “We don’t know why autism exists still, only that it could be a combination of biological and environmental factors,” Dr. Dardig adds.

Irrespective of the cause, it has been established that the best interventions are when they are provided early and are multi-sectoral. “In an ideal world, we want to talk about a team where the school and family are equally responsible and equally contributing to the child’s training and well being,” says Dr. Heward.

One of the biggest challenges in special education in America has been the transition of secondary students with all kinds of special needs from high school to adult life. For a number of years, parents felt the child was well taken care of by school until he/she turned 21. “After that they are distraught as they have to figure out the next step by themselves,” Dr. Hardig says.

To address this issue, the country thought up a “transitional plan” for every student as a real effort at self-determination, getting the students to decide for themselves. This programme begins when the child turns 14 and is evolved by the school, family and other agencies that help with employment, living arrangements and guidance for issues at work.

Dr. Heward also explains that in the U.S., special education means providing as much relevant teaching/training to the student so that he/she may be able to feel comfortable in a regular education classroom, or the mainstream. The Individualised Education Plan team starts with this assumption. Special educator function as consultants to help regular school teachers support the children with special needs. In the U.S., just over 50 per cent of all children with disabilities spend time in regular classrooms and a further 16 per cent are in separate classrooms in regular schools, he adds.

However, they both hasten to caution that unless the intervention is appropriate, the process may even set a child back further. Unless the child becomes a part of the meaningful academic fabric of the classroom, it will not work.

Reference Link
http://www.hindu.com/2010/03/09/stories/2010030961670700.htm

Courtesy
The Hindu

Lending a helping hand to the disabled

They waited for DVD players to play educational audio-visual CDs

---

— Photo: A. Shaikmohideen.

CONCERN:Tirunelveli Collector M. Jayaraman handing over DVD players to visually challenged students.

TIRUNELVELI, India: The District Collector M. Jayaraman, who used to take immediate action on petitions from the disabled, has once again proved that the Union Government had rightly chosen him to receive the national award for ensuring the welfare of the persons with disability.

After reading the news on Mr. Jayaraman receiving the prestigious national award from President Pratibha Patil for his stupendous service for the welfare of physically and the mentally challenged, a reader, who did not want to be identified, sent a demand draft for Rs. 5,000 to the Collector as a token of appreciation of this feat.

Even as Mr. Jayaraman was thinking about spending this amount in an apt fashion for the benefit of the disabled, a group of fully and partly visually challenged students recently met him during a function held at Florence Swainson Higher Secondary School for the Deaf, Palayamkottai with an appeal that they were waiting for the DVD players to play the educational audio-visual CDs.

“Since I’ve already received similar petitions during one of the weekly grievance day meetings and forwarded the appeals to the District Disability Rehabilitation Officer for further action, I decided to use the Rs. 5,000 and put some more money for purchasing 15 DVD players for the visually disabled students,” Mr. Jayaraman said.

When the weekly grievance day meeting was conducted at the Collectorate on last Monday, he handed over 15 DVD players to the visually challenged students, who thanked Mr. Jayaraman so profusely.

Reference Link
http://www.hindu.com/2010/02/23/stories/2010022350940200.htm

Courtesy
The Hindu