Written by Jason Lieberman
As a new father, I know there is nothing scarier than your child’s first doctor’s appointment with a specialist. Unlike visits with the pediatrician, which are often well visits, one only has to see a specialist if something is wrong. If you are lucky, the doctor either says that you are neurotic parents and your child is okay, or like us, it is explained that the reason for your visit is relatively minor, manageable and not life altering. Alternatively the doctor’s message could be one of uncertainty or a diagnosis of a serious condition or disability. As someone with cerebral palsy, although I do not remember the visit at which I was diagnosed as I was only 11 months old, I can tell you that a diagnosis of a disability is a life-changing, dream shattering event. You walk into the doctor’s office with a beautiful baby, or in the case of a prenatal diagnosis, a beautiful ultrasound picture — either way with hopes, dreams and expectations for this new person you have created. You walk out with medical jargon you most likely don’t understand, shattered dreams, altered expectations, and most likely a feeling that you are in an alternate reality, you can’t fully understand or appreciate yet. This experience is most effectively articulated by Emily Perl Kingsley, a writer who has a son with Down Syndrome, in her essay Welcome To Holland.
It may seem that I am advocating avoiding the doctor’s visit, as if the lack of a formal diagnosis would help to avoid this alternate reality, but I’m not. Problems exist whether or not their name is known, and a formal diagnosis allows for the possibility of a plan to help deal with one of the two major challenges associated with any disability diagnosis: how to move forward both medically and in terms of daily function. It does not however deal with the effects of the new reality, the shattered dreams, altered expectations and inability to effectively relate to anyone who does not share your new reality. This includes relationships between family members of the person with the disability as well as friends and community members who have no connection to life with a disability.
I believe that we have been given an idea on how to move forward in this regard from Torah portion this past Shabbat, Parsha Trumah. The Parsha, according to most Rabbinic opinions begins chronologically right after the incident of the Golden Calf. The Israelites have just witnessed the death of those who were most closely connected to the sin. They do not feel as close to Him and God’s faith in the people has also been shaken. Their reality and relationship are forever altered. While things will never be the same, the Israelites must move forward. In order to help them do this, God presents the people with a new task; a way to reconnect with both each other as a community and God Himself. He commands them to create the Mishkan, or Tabernacle, with its specifications being detailed throughout the Parsha. This new goal gives the people an opportunity to connect through a new tangible activity unrelated to their relationships they had prior to the life-altering event. In addition, like the Mishkan relationships take time to either build or rebuild, it is a painstaking, challenging process.
Furthermore, God realizes at this point that he cannot require, or force a relationship, as He had prior to the giving of the Torah. Each individual must want to engage on his/her own terms. As it says in chapter 25 verses 1-2:
God spoke to Moses, saying. Speak to the Israelites and have them bring Me an offering. Take My offering from everyone whose heart impels him to give.
By taking small concrete steps, only possible in the new reality, a relationship can be built on a new foundation. This foundation is one that is aware of the past, but not dependent on it, while mindful of the changed reality. Furthermore there is a mutual understanding that, given the new reality, the relationship will never be what it was. Therefore if a relationship must start anew, it can only do so among willing participants, and only when each is compelled to participate in the rebuilding process. In this way people living in alternate realities can work to find common ground leaving everyone a little less isolated and alone.
If we remember that each milestone in life, reached or unreached, has the opportunity to reinforce the trauma of the impact of limitations a disability places on people, family and community, then we will insure that people with disabilities and their families are not alone as the go through life.
Jason Lieberman serves as a board member and treasurer of Matan. Diagnosed with both cerebral palsy spastic diplegia and inattentive adhd, jason is a tireless advocate for the full integration of people with disabilities in all aspects of jewish life and community.