Editor’s Note: Shelly Christensen, MA literally wrote the book on inclusion of people with disabilities, the Jewish Community Guide to Inclusion of People with Disabilities and is writing her new book, From Longing to Belonging: Empowering Faith Communities to Include People with Disabilities, due out in 2017. Shelly is co-founder of Jewish Disability Awareness and Inclusion Month (JDAIM) recognized in February and consults with faith community organizations to welcome, support and invite all people to share their gifts with the community.
On Friday, February 3, at 8 a.m., the Jewish Sacred Aging podcast will feature a conversation with Shelly about JDAIM and her outreach activities. Visit our Podcast page to listen or download the program.
My Mom recently moved out of her four-level mid-century modern home where she and my Dad raised my brother and me. Dad died nearly 20 years ago, and mom lived there by herself until she fell and broke her kneecap while making a drugstore run in September. For mom, and for my brother and me, life has been a roller coaster since then. Three hospitalizations, a litany of health concerns, a broken kneecap and rehab, and a compression fracture to her back would be traumatic enough for any one of us. Moving to a beautiful new apartment, giving up driving, and adjusting to having a bevy of support people in her life have added more ingredients to an already challenging time. She’s always been in charge of her entire adult life.
I wondered if that would change due to these intense life-changing events. I wondered if it really had to change.
I based my thinking of how to live as independently as possible, as one wishes, on the years of raising a child with a disability. Now an adult, Jacob, who lives with Asperger syndrome, had a great deal of support and advocacy from my husband and me, always with the goal of living an independent and self-determined life.
I was Jacob’s advocate during his school years. As he got older, went to college and found a great job, he used his advocacy skills to navigate the world, and he lives a very independent life. It took a lot of improvisation to figure out how to work with the professionals in his life, expressing what our hopes, dreams and goals were for our son, and then learning how we could work together to support Jacob. Our goal has always been for Jacob to make his own decisions in all the realms of life.
I am grateful for those experiences and for the results of a very difficult journey.
And now I find myself engaged in a similar journey with Mom, but with striking differences. I can only hope that I am as good an advocate and partner with her as I’ve been with my own child.
There’s a fine balancing act in play. I told Mom, “I never want to be your decision-maker. This is your life, your choices. I can find information, make appointments, sit with you in meetings with caregivers and take notes so we can discuss them later. I can tell you what I think, but only when you ask. And I can do what daughters do. I can visit you, make sure you have the food you like in the house, encourage you to get involved in the many things offered in your new home that you’ve been interested in your whole life, like singing, knitting and going to Shabbat services.
What I cannot, and will not do, is make your decisions for you. Not after you’ve lived your entire adult life making your own decisions.”
The journeys for my son and for my Mom are both driven by my belief that each one of us should define what constitutes a quality life. Yes, when our son was a child, we made those decisions, as any parent would do. But it was also our job to ensure that he had the skills and support to be the captain of his own life.
Mom has a lifetime of skills that help her adapt to whatever she needs to live her definition of a quality life. My job, like it was for Jacob, is to give her the space and the resources to help her make her own decisions. And even during the last few difficult months, when her life was turned upside down, I know that she deserves the right to make decisions about her life. As complex as this is, I know that Mom looks to my brother and me to be her support people, encouraging her in practical and emotional ways to live the kind of life she wants for herself.
Mom has already found joy, sitting at night in her living room, looking out over the lights of the city, watching airplanes leave and arrive, feeling solitude and peace, even as she adapts to the next chapter of a good life.
February is Jewish Disability Awareness and Inclusion Month. The message that we promote during JDAIM is that all people, regardless of ability, age, status or diagnosis, have the right to determine how they live their own lives, just like anyone else. Inclusion is about supporting someone to live the kind of life they want to live. I am reminded of that as my Mom enters into a new chapter of her life.