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Support Families, Not Orphanages, For Vulnerable Children
Tue, 10/08/2013 - 20:00
Special To The Jewish Week
Eric Rosenthal is founder and executive director of Disability Rights Inernational.
Eric Rosenthal is founder and executive director of Disability Rights Inernational.

My grandma Sadie lived in the town of Droghobych in Ukraine until she was 13. Nearby, there is a dirt road through a forest leading to the mass graves where the town’s last Jewish population lies buried. It is barely marked — if you did not know to look for the large slabs of concrete between the trees, you would have a hard time finding it. As a human rights lawyer who has spent a lifetime documenting atrocities, I was not prepared for the effect of this visit a few months ago. I broke into tears.

 Mass graves didn’t bring me to Droghobych. It was another hidden source of suffering — an orphanage for children with disabilities. In a clearing in this forest lies a converted monastery where 75 girls and women ages 6 to 35 are likely to spend the rest of their lives. 

There I saw children living in near total inactivity. Some girls rocked back and forth, bit their fingers and scratched their own skin.  Psychologists tell us that when children are raised without emotional connections, any stimulation is better than the nothingness of the institution. And even when there is adequate food, some children will stop eating. This “failure to thrive” is a loss of will to live. In one crib I encountered an emaciated girl with contorted arms and legs. She looked like she was 9 or 10, but she was 18. Despair, malnutrition and lack of opportunity to move about take a toll.

When young children are raised in custodial institutions, empirical studies show that death rates are high. Children who survive may face irreversible psychological damage. When children do not form emotional attachments at an early age, some will never learn to do so.   Institutions cause developmental and cognitive delays — even for older children. Orphanages generate disability.

The Droghobych orphanage is the tip of an iceberg. At least eight to 10 million children grow up in custodial facilities around the world. Most people are surprised to learn that up to 95 percent of children in orphanages have a living parent. Children are usually placed in institutions because of a disability or because their families are poor and vulnerable. In Droghobych, I met a mother distraught as she said good-bye to her 6-year-old daughter. Doctors told her the disabled child is better off in the orphanage. Her husband left the family, and she must go to work. She could no longer afford to keep her daughter at home.

Proven alternatives exist. Children with the most severe disabilities can thrive in the community with family support, habilitation, and education. For the tiny number of children with no parents, or whose parents prove to be abusive, extended family or substitute families (foster care) are preferable to institutions. Side-by-side studies tracking children in foster care and orphanages show that children do better in some family setting.

Powerful as they are, scientific studies do not capture the worst horrors.  Disability Rights International, the organization I direct, has documented this reality in more than two dozen countries. I have been to institutions where women and girls are raped and trafficked for sex. Without oversight, children just disappear. Staff members remove teeth with pliers and no anesthesia because “children with disabilities do not feel the pain.”   Remarkably, some children are denied medical care because they are “already damaged.” I have shot hours of video showing children tied to beds, locked in cages, kept in isolation cells, or left untouched in cribs or barren floors.  

How can we protect these children? Disability activists and families around the world are demanding their governments provide the supports necessary to allow children to grow up as part of society. These activists deserve our support. 

Many well-meaning international charities, unfortunately, now provide funding for orphanages and other institutions that separate children from families and inadvertently perpetuate segregation. The funding that goes to orphanages should go to parents who wish to keep their children. We must support families and integration rather than orphanages and segregation.

Jewish philanthropists can lead the way. What can be more Jewish than to stand up for family and community? And, even more important, we recognize that every human life is sacred and cannot simply be thrown away.

This year, I have been fortunate to receive a prize conferred by the Bronfman family in honor of Charles Bronfman, a truly great man who has shown the power of one person to make the world a better place through his generous and well-placed philanthropy. The Charles Bronftman Prize goes to a person similarly motivated by Jewish values who has had a global impact.

After 20 years in the entirely secular field of human rights, this recognition has brought me to reflect on the experiences that guided me to fight for the rights of people with disabilities. I am reminded about conversations I had with my Grandma Sadie when I was a child. She asked me to remember our family left behind in Droghobych. I now see that to keep that promise I must do more than visit gravesites. Perhaps the greatest lesson from Jewish history is this: we know what happens when any person is treated as less than human. Let us remember the children of Droghobych and the 10 million children living in orphanages today.

Eric Rosenthal is founder and executive director of Disability Rights International. On Oct. 23 he will receive the Charles Bronfman Prize, a Jewish humanitarian award for the global impact of his work.

Charles Bronfman Prize, Community, Droghobych Orphanage, family, Jewish Humanitatian, Ukraine

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It was heartrending reading your account of these institutions which are no better than torture chambers. I have seen television programmes on these institutions a few years ago and I felt powerless and helpless. However, with your stalwart endeavours such as publicising the details of what goes on in these places you are setting the bar in terms of aiming all the time to work towards getting rid of these places. I know Prince Andrew's former wife, Sarah Ferguson, has had a lot ofnegative publicity in the past, but at least she has in her own way done quite a bit to raise awareness of these so called orphanges - I'm not sure which country it was she was campaigning about. I read that she'd raised vital funds in her efforts to combat these horrendous conditions.

Thank you for the work that you are doing on behalf of parents and children around the world. The plight of children and adults with disabilities in other countries helps us to gain a much needed perspective on our own lives as families coping with disabilities as well as the need to reach out not only in our communities but internationally.

Such a moving account, Eric! I'm so proud of you & Disability Rights Int'l.

Thanks for raising the issue. I could not agree more fully; no one but a parent knows what is best for a child and the family unit and will strive to achieve positive outcome. This is certainly a global issue. Here, in Canada, government's own statistical data (Alberta) indicates that "70% of children" under ministry direction are those with special needs. While institutions and orphanages are more frowned upon today, essentially, forcing natural families to relinquish custody and have their child enter into the foster custody system as a means of gaining access to supports and services is no less an archaic perspective; an unreasonable, human rights blemish. It is 2013 and yet with the exception of Alberta, no other Province or Territory within Canada has protective legislation to ensure that families facing situational circumstance due to disability issues alone - in the absence of maltreatment or neglect - are not served by the same system. SAMANTHA'S LAW indicates that families with children who have medical and developmental diversity must be offered the same degree of supports to natural families as would be offered to the child under government direction. Family-Centred Care Practice is imperative to maintenance of the family unit. It is also the most cost-effective and humane mode of service delivery. I endeavor to pursue Federal recognition of SAMANTHA'S LAW for the large population who have no such means of protecting their family's best interest. SAMANTHA'S LAW is my daughter's legacy. No child's health or welfare should ever be compromised to achieve adequate medical attention. Sincerely, Velvet Martin, Spokesperson for Protecting Canadian Children and Founder of Samantha's Law Alberta Primetime: