Ami and Sivan (not their real names) are getting married soon. They are attending sessions to practice communication and problem solving skills, undergoing bride and groom counseling separately, learning household management and budget planning, receiving sexual education. They are very happy together and cannot wait to begin their life’s journey in unison.
What you may not know about Ami and Sivan is that they are both people with a developmental disability. Go back for a second and reread the above paragraph. What do you think now?
The prevailing trend in Israel is to discourage people with a developmental disability from getting married, in many cases because of pre-existing prejudices. But people with developmental disabilities, like all of us, don’t want to be alone – they want to be socially active, to form relationships. We as a society do not have the right to intervene and tell someone they cannot start a family. We cannot deny people the freedom to be with someone else and instead condemn them to a life of loneliness.
The Ruderman Family Foundation has partnered with the Feuerstein Institute to create a formal structure whereby people with developmental disabilities can get married. We have formed a joint public committee which will hear from a wide range of leaders from different fields- judges, rabbis, lawyers and social workers among others. The State of Israel, represented by the Welfare and Education Ministries, will weigh in on the ramifications of encouraging marriage between people with disabilities. Their support and sanctioning these marriages will help create an atmosphere which will welcome these unions and aid a public awareness campaign we will launch soon.
Our partnership aims to establish contact with existing couples to prepare them for marriage, to provide a support system for the couples after marriage, to change public attitudes and to create a suitable legal infrastructure to uphold legal requirements. Rather than shying away from this conversation, we are bringing it to the forefront.
Supporting intimate relationships between people with developmental disabilities is different from promoting platonic, social relationships. A social bond is easier for society to understand and accept. The barrier exists when the friendly relationship turns to formal matrimony because it raises issues in four key areas:
Divorce in Jewish law requires both sides to not only recognize the formal act of divorce but have a deeper understanding of the notion that the relationship is over. It is a challenge to show that a couple with developmental disabilities can comprehend this.
Will the State of Israel recognize their union? Even after they are married, couples with developmental disabilities will still need to be supported by the State and the State will be partially responsible for their wellbeing. Additionally, if they have a child with a developmental disability, the Sate now becomes responsible financially for that child- to provide services which are offered to this population. We will demand that the Sate pass laws and put its support- both morally and financially- behind this initiative.
There are myriad ethical dilemmas we will need to answer. For example: Can people be forced to undergo genetic testing in advance? If the disability is genetic, then the possibility exists that their children may be born with a developmental disability. Take the case of Taysachs where people voluntarily get tested before they date so as to avoid the chances of a child being born with Taysachs down the road. Should we test? Should it be voluntary or mandatory?
Above all, many people will wonder if two people with developmental disabilities are responsible enough to care for their own kids. If not, what are the alternatives? Can we let them get married but prevent them from bringing children into the world?
We believe that the experts on the public committee we have formed can grapple with the existing dilemmas and explore this complex issue from every angle. We understand that some of the questions may go unanswered or may be too difficult for our society to handle. But that does not relieve us of the responsibility to start the discussion, to recognize the rights of people with developmental disabilities, to seek solutions so they can develop long-lasting relationships.
Ami and Sivan have a RIGHT to get married. Our job is to recognize that right and support them.