Not About Us, Without Us
During a talk I gave on the topic of marriage and relationships of people with intellectual disabilities (ID), I was interrupted by a well-known psychoanalyst in the field. “How could you in good conscience enable a marriage like this? Why are you setting up something doomed to fail? This is not acceptable nor professional, this is wrong and unethical.” His comments were echoed loudly in the room by the many nods and eye-rolls. There is an inherent misunderstanding here.
I started with the basics. “As we all know, in the world of therapy, crossing through the various modalities lies the adage ‘to start where your client is’. In my office sits two individuals, not a stereotype, not ‘special needs’. Sitting in front of me are two individuals born with unique abilities and disabilities, just like the rest of us. They both have Down’s syndrome, made a choice to join forces, and are now happily married to each other.
You want to tell me that I’m unethical? Abraham Maslow, one of the fathers of psychology and the human-first approach, theorized the urgency for connection as one of the most critical human needs. Who are we to deny them that which is so intrinsic to humanity?”
The psychoanalyst ignored my points and continued ranting about various studies that supported his rhetoric. It became increasingly clear to me that his understanding, or frankly lack thereof, was due to his not having any exposure to couples with intellectual disabilities. As a professional with experience in “the field,” I feel that I am charged to help change this negative and outdated narrative. While this psychoanalyst may be an expert in the field of therapy, his outlook on individuals with ID is riddled with negativity and misinformation.
This outdated approach dictated that we, the professionals, were making all the decisions for individuals with special needs. We put them in places like Willowbrook, and objectified people with ID and ignored their humanity. The essence of the term “humanity” defines us with unique needs and desires, abilities and disabilities. Yet do we really need to manage their every move? What would be so bad if we only intervened when we are needed or wanted? Our responsibility is to help guide these individuals, not to make the decisions for them, even if we are convinced that it is for their own good.
Now, of course, we do not simply let the couple fend for themselves. When a couple enters the program, all avenues are explored and resources employed to assist and empower the couple in every way we can. From finding a home to learning about the intricacies of marriage, weekly shopping trips, and everything in between. Therein lies the difference between the outdated approach and real-life experience with people. The mutual respect and understanding between the provider and client ensures that we hear the client’s wishes of when to assist, and when to take a step back. Thank G-d we are succeeding.
The only person to say that something is impossible is the person who has never tried. We can say “been there, done that,” and now we’ve achieved ten years (and counting) in supporting couples with intellectual disabilities.