“There is no such thing as a special needs grocery store,” so said special education Ph.D. candidate Ruth Bates in June of 1990. While I agreed with her wholeheartedly at the time, I confess that I did not understand a word of what she meant, but now I do. No one is going to change daily life to accommodate people with special needs. It is up to us in the field of special education to guide, support and protect those people as much as possible when they are out on their own functioning in real life settings.
With the new “human rights” legislation that has now been created to protect people with disabilities, there is a huge misunderstanding about one of them that has caused great harm to the very ones it was meant to protect. “People with intellectual and/or developmental disabilities have the same basic legal, civil and human rights as other citizens. They may need accommodation, protection and support to enable them to exercise these rights.” For some reason professionals in the field have been advising adults with disabilities about sentence one, which relates to making their own decisions, but at the same time have been neglectful about sentence two, the necessity to give those people the needed accommodation, protection and support for making those decisions. Here is a heartbreaking example.
A young woman with a cognitive disability got herself involved in a harmful friendship with an older woman. The parents of the woman with the challenge notified concerned specialists often about the enormous numbers of specific dangers that were part of it for their daughter, but no one did anything to help her daughter clearly understand the mixed messages she was getting from the woman or the other confusing communications she was experiencing. There was no one there to help her daughter cope.
The exact legislation that was designed to protect her daughter was never used to help her. Just the opposite. Authorities took the liberty to tell her daughter about her right to make her own decisions about relationships but never included educating her about the pressures she was under in this particular one. In this case the young woman needed important guidance to identify the blatant red flags of interaction that were hurting her daily, but she never got that. Instead her advice, which was solely to make her own decisions, kept her completely immersed in the relationship without any protections. In time her interactions with this older lady became for her a situation that kept escalating to the point that she became severely depressed, angry, on medication and almost completely shut down.
While no counselor would step back and let a child hurt him or herself by staying in a dysfunctional relationship, why would any professional think it was okay to take a back seat when it comes to advising a person with a disability? In a friendship someone with a cognitive delay needs just as much guidance and protection as a child.
“Widening Our Circle,” a new ARC funded program, is already at work helping adults with disabilities to learn skills to better protect themselves in friendships. Because people with intellectual and/or developmental delays have difficulty identifying harmful signs, they need much help when in a relationship with people in the community. According to their right they need to work closely with a counselor who can help them understand relationship cues and also identify problems.
No, “there is no special needs grocery store.” Now I get it. This large and wonderful group of young adults who have cognitive delays can, with the aid of trained educators and support personnel, function quite well in the “grocery store” of life. While they many times do not need guardians to take over their right to make personal choices, they almost always do need the help and guidance of trained professionals to steer them away from dangerous situations and onto safer ground. “Inclusion” in the field of education is a very important concept. It refers to giving a person with a disability the right to have the same opportunities as others, but it also means providing that person with the necessary tools to be able to benefit from them effectively.
I love this quote that we get from Mahatma Ghandi, “Be the change you want to see in the world.” While it is time to go all out to empower people with challenges to exercise their right to make up their own minds, it is also the exact same time to stick with them until they make safe and proper decisions. With respect to the former Indian leader and his legacy, please advocate for this needed change. While no responsible parents of a child would let their son or daughter stay in a detrimental relationship without intervening, no adult with a disability should be allowed stay in one either.
Now is the time to spread information about the real human right for people with disabilities–to make their own decisions under the necessary guidance and protection of their parents, loved ones and professionals. It is time to look at this “human right” again and focus on correcting its misuse that has been harming too many adults with cognitive challenges for much too long.