Dr. Beth Harry

05/12/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: Parents insisting on family and social inclusion for their children.

Mother of a young woman with Down syndrome who was born in the 1980s: "Thirty-one years ago, it was very difficult. At that time, people told you to hide these children. Keep them away from the general public. But we decided - No! This is our child! She has a bigger sister and a younger brother, and she's one of ten cousins, so she's always made to be a part – never excluded from anything."

Photographer Credit: Rashmi Mathur https://bit.ly/3E2a3NL

05/10/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: Parents finding meaning through faith.

In the face of social negativity and family stress occasioned by health problems and lack of resources, parents at Immortelle Children's Centre found meaning through their faith.

The mother of a son with Down syndrome born in the 1980s: "We always felt there was a reason our son was born. Eventually, we realized that he was born so that we could do the work we did for Down syndrome and disability. He was the inspiration – the motivator."

The mother of a daughter with Down syndrome born in the 1980s: "Although you don't always know it, people observe you, and someone might say, 'You're an inspiration to me!' Little do you know that you're giving someone encouragement. If I did that, thank you, dear Jesus!"

The father of Daniel, 'the pan player,' who has Down syndrome: "After the first gig when Daniel performed on the pan, a police officer in plainclothes started taking pictures and was crying. He said he deals with people in all kinds of places and doing all sorts of things but – 'this is real inspiration here.'"

The father of a young woman age 40, who has multiple disabilities: "Once, I was in a public place with my daughter, and there was this young man looking at me. He watched how I dealt with her. He came over, and he said to me, almost in tears, 'You have taught me to go home and look after my little children.' I said, 'If that is the reason why my daughter is living, so be it.'"

Dr. Beth Harry is an advocate and author who writes about cultural reciprocity in special education near me. Learn more.

05/06/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: A father's story of personal transformation.

Francis, the father of a young man now age 17 who has multiple disabilities, described his moment of transformation regarding his son's disabilities. He and his wife, Laura, created Cause an Effect, a disabilities service in Trinidad and Tobago. Click the link to check it out.

"I walked into the church one day and cried out to God and asked him what was going on. I was angry that my work was falling through. I was angry at having to leave all of this to deal with Isaiah. I was angry with my wife. I was angry with everybody. I was angry at God. And I cried out, "God, I just cannot carry this. Help me!" I'm telling you just as I saw it. Two angels came and looked at me, and I saw concern in their eyes. They came and tapped me on my shoulder twice. I started seeing everybody in the church as if their skin was stripped. I was seeing their sinews, muscles. I was seeing their torment and agony. I was able to see that everybody else was having some kind of problem and that I was not unique. I walked out of that church feeling light. I couldn't wait to go home and tell my wife what I had just experienced. And that started a journey of self-realization. I had been on a fast track, not in touch with what was really going on, and I had to stop and deal with everybody and everything."

Photographer Credit: Mark Lyndersay https://bit.ly/3uAavji

05/04/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: Educate the doctors, please!

In our book, Meeting Families Where They Are, Lydia and I noted how doctors here in the U.S. encouraged abortion for mothers who were pregnant with a child with Down syndrome. In my study in Trinidad and Tobago, we didn't hear about prenatal testing, but there was often the same devaluing of the child's worth. The most negative responses came from professionals present at birth. From doctors in the 1980s — "I think you have a mongoloid baby" and "Well, we don't have an island scholar here!" — to a doctor in 2005 speaking to a new mother whose baby had health complications — "Your son has Down Syndrome. Your problems are only now starting." In contrast, there were some good stories, too — one mother of a newborn with Down syndrome received comfort from her doctor, "I said, 'Doctor! What's wrong?' She said, 'As far as I'm concerned, nothing is wrong. This is God's work.'"

Dr. Beth Harry is an advocate and author who writes about cultural reciprocity in special education near me. Learn more.

05/02/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: Parents' Giving Thanks for their Children.

Parents of children at the Immortelle Children's Centre in Trinidad described how their reactions to their children's diagnoses moved from initial shock and dismay to intense worry about their health and development, towards the great joy of getting to know and treasure their children. The following statements were typical: https://bit.ly/3xm549m

04/29/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: Teaching at Immortelle Children's Centre — "It brings a joy!"

With very limited resources, the teachers at Immortelle were very upbeat. In my interviews with them, I asked why they were doing this job. These were some of their answers: https://bit.ly/3O4ofdH

04/26/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: Parents' Everyday Advocacy.

We usually think of advocacy as public, organized actions. But the stories told by parents in Trinidad/Tobago show how their taken-for-granted efforts were truly acts of advocacy on behalf of their children.

In visiting the mother of a young woman in her twenties who had hearing, visual and mild intellectual impairments, I took a winding, uphill road through a neighborhood on the hillside that was quite unknown to me. I asked the mother how she and her daughter had traveled to Immortelle Children's Centre for all those years. "Three taxis," she said, smiling. "One from here to the main road, one into town and one up to St. Ann's. If we set out at the right time, it would take us about an hour and a half each way through the traffic."

A mother of a young woman with an intellectual disability described how she insisted on social inclusion for her daughter when she was a child: "If my friends had a party and other kids were at the party, it was difficult. You know how many cakes she put her hands in! But if I didn't keep taking her, then people would feel she shouldn't be invited. So I always made it clear that she was part of my family. She was one of my children. If you wanted any of them, you have all."

Dr. Beth Harry is an advocate and author who writes about cultural reciprocity in special education near me. Learn more.

04/24/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: Immortelle Children's Centre — then (1983) and now (2002-present).

The school started with 12 children in 1978, supported only by parents' fees and donations from business people in the community. Currently, thanks to the hard work of the principal and much community advocacy over the years, this school and other private special needs schools now receive partial support from the government of Trinidad and Tobago. Immortelle now serves up to 70 students with a wide range of disabilities. https://bit.ly/3xm67Gf

04/22/2022

Childhood Disability, Advocacy and Inclusion in the Caribbean: The Metaphor of the Immortelle Children's Centre.

This was our metaphor for a school that would nurture and protect children too delicate or too unique for the harsh realities of a highly academic, examination-driven school system — a system that did not imagine itself responsible for children who would not fit that mold. https://bit.ly/3HWUiIu

04/20/2022

Glenn Niles, the founder of Down Syndrome Family Network (DSFN), is a powerful advocate for inclusion. In an interview for my book, Glenn explained that he does not support the idea of separate schools for children with disabilities. While I fully agree that inclusion must be the goal, I believe that the education system in the Caribbean will need essential restructuring to accommodate and do justice to children with significant disabilities. Mrs. Sharon Clark-Rowley, the wife of the prime minister of TT, was the keynote speaker for DSFN's World Down Syndrome Day. She stated that the government plans to pass legislation to enforce disability provisions in the workplace and beyond and called on the disability rights movement to continue to advocate for transformative change. I believe that transformative change needs to start in the public education system.

Keynote speech at DSFN's celebration of World Down Syndrome Day on March 21: https://bit.ly/3E2d94l

Down Syndrome Family Network: https://bit.ly/3OqidEz

04/18/2022

Introducing Childhood Disability, Advocacy and Inclusion in the Caribbean: A Trinidad and Tobago Case Study.

This book is a case study of the Immortelle Children's Centre, a school for children with disabilities in Port of Spain, Trinidad. The book was published in 2019, but my plans to promote it in Trinidad got buried in COVID restrictions. So I'm sharing information on it now, as I think it tells an inspiring story of the power of advocacy on behalf of people with disabilities. I started the school in 1978 to provide services for my daughter and others like her as there were no services for children under five at that time. I cannot take credit for the school's success, however, as I left in 1986, and the parents took over and set the school up as a nonprofit. Since then, the school has thrived under the leadership of Jacqui Leotaud, its indefatigable principal and primary advocate. The book is a personal and historical account and highlights narratives of parents from the 1980s as well as current parents, teachers and community advocates. https://bit.ly/3HWUiIu

04/01/2022

Don't think you know someone just because you know their name...

In my commencement address I tried to share this tremendous honor with a young man named Daniel Gulston, a Trinidadian musician who plays the steel pan. The theme of my speech was "Don't think you know someone just because you know their name." In telling Daniel's story, as told to me by his parents, I wanted Lesley University's 2019 graduating class to understand that Daniel having a diagnosis of Down syndrome does not define him.

You can watch Daniel, now age 17, playing in the steel band in Trinidad and you can hear his story in the video of my speech at the URL.

“Don’t be afraid to open the doors life presents you with. That’s the challenge, to turn the ending into a beginning,” special education scholar Beth Harry s...