Annie’s story.

At 21 weeks gestation, we were informed that our daughter, Annie, had a genetic condition associated with profound disabilities. Thus began the most difficult but, ultimately, most enriching journey of our lives.

We realized it was highly likely that Annie would require life-saving interventions in her infancy. From the outset, we wrestled with an agonizing, moral question: Would these interventions and the preservation of her life be in the best interests of our daughter and our family?

To make an informed decision, we began to research. We discovered children who were certainly very impaired, and we were afraid. However, as our knowledge increased, and we met more families with children deemed to be ‘severely disabled’, our fears were alleviated.

Shortly after Annie’s diagnosis, I attended the funeral of a young man with severe cerebral palsy, who had never walked or talked. The midweek service was filled beyond capacity. After the service, I spoke to his teacher. Tears fell freely from her face as she told me that her student had ‘changed her life’. How could that be?

Children with Annie’s condition seldom live into their teens, yet we have observed that when their child dies, the families are absolutely [...] continue the story

The lasting effects of a temporary disability

By Margo Milne

Imagine you were born perfectly fit and able-bodied. As a teenager, you suddenly became severely physically disabled, but then you became able-bodied again. How would that affect your attitudes to disability and disabled people once you were an adult?

When writer and broadcaster Hardeep Singh Kohli was 13, he came down with Guillain–Barré syndrome, a usually temporary condition that causes sudden paralysis, often triggered by infection. He was in hospital for 10 weeks, and it took him a year to learn to walk again.

Lucy Pask, who runs the website Great Aunt, also had Guillain–Barré syndrome, in her case at 14. After 2 weeks in a wheelchair, she recovered sufficiently to walk with a frame, and was back at school within 12 weeks.

Hardeep didn’t see himself as disabled and wasn’t aware of any discrimination. Lucy felt that, if anything, discrimination operated in her favour. She got lots of attention, long extensions on coursework deadlines, and was offered money by charities. People who had previously bullied her now protected her: “It seemed like in their minds; it was fine to bully me whilst I was ‘able bodied’ but whilst I was ‘disabled’ I was totally out of bounds, a person to [...] continue the story

ArtAids Foundation present You Are Not Alone

The Fundació Joan Miró, the Museo de Arte Contemporànea, Vigo (MARCO) and the ArtAids Foundation present You Are Not Alone, an exhibition curated by Hilde Teerlinck, director of FRAC Nord-Pas de Calais/Dunkerque and Irene Aristizábal. The exhibition has the support and involves the collaboration of Mr Han Nefkens and is sponsored by Fundació Banc Sabadell.

You are not alone was intended to prompt reflection on the discrimination and stigmatisation to which, even today, AIDS sufferers are subject. Although medical advances have increased the expectancy and quality of life of sufferers, at least in the developed world, this progress has not been reflected in a reduction in the social rejection they experience.

In You are not alone, 14 artists from around the world helped to fight stigmatisation by reappraising the causes, consequences and current context of Aids as well as the ways of fighting it.

The ArtAids Foundation had produced works specifically designed for the exhibition by nine internationally acclaimed artists whose work does not generally approach the subject of Aids. The selected artists were: Deimantas Narkevicius (Lithuania), Latifa Echakhck (Morocco), Danh Vo (Denmark/Vietnam), Christodoulos Panayiotou (Cyprus), Lorena Zilleruelo (Chile), Lucy & Jorge Orta (UK and Argentina), Antoni Miralda (Spain) and Elmgreen & Dragset [...] continue the story

Not Acceptable R-word

“Not Acceptable” is a powerful and compelling 30 second television PSA which gives voice to a variety of diverse communities each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs. It culminates in actress and self-advocate Lauren Potter from “Glee” stating that it is not acceptable to use the word ‘retard’ and she and “Glee” co-star Jane Lynch make a call to action to stop using the word and to promote the acceptance and inclusion of people with intellectual and developmental disabilities and to make their pledge online at http://r-word.org.

The PSA was launched by the Spread the Word to End the Word campaign, an on-going initiative from Special Olympics and Best Buddies to eradicate the derogatory use of the word “retard(ed)” from everyday use and promote the inclusion and acceptance of people with intellectual and developmental disabilities.

May 20, 2011

Texture of Our Soul

It is a short documentary of twelve minutes (12 min) on life of Leprosy Patients, their pain, suffering, faith and above all their enthusiasm toward life. It is very heart touching Documentary in totally unique format of poetry, it hits you very hard in head by showing the discrimination of society for lepers.