When I was writing my last blog, “Advocating for Justice“, I had the opportunity to speak to a friend about the ‘mission’ of the agency we had both worked for and the philosophy of the “Independent Living Movement”. She had also raised several children with special needs. I had the opportunity over the course of the last few days to seek ‘clarification’ from another friend regarding a very troubling exchange I’d had 4 days ago with a friend. That exchange resulted in a “collapse“.
I’ve been considering how to process and handle the emotions I experienced, but wasn’t sure how exactly to do so, until talking with a friend who suggested thinking of this particular part of the exchange as a ‘difference in philosophy’.
I had posted something that had meaning for me. It read: “Before you assume, learn the facts. Before you judge, understand why. Before you hurt someone, feel. Before you speak, think.” I try really hard to do this, I’m not always successful, but I try. I think this speaks to personal responsibility, empathy, consideration, and understanding.
A friend got something completely different from that post, she seemed to believe that it implied an expectation of perfection and took particular exception as a person who is disabled. She thought it suggested that people with disabilities, including my son by name, should be different somehow. She went on to suggest this was out of the question for people with certain disabilities, listing them. She suggested that posting little ‘reminders’ like the one above had the effect of ‘shaming’ others.
I was stunned. I was absolutely lost in the exchange. I don’t see being polite, practicing empathy and being considerate as expectations of perfection. I see them as acts of civility.
I was familiar with all the conditions she listed, my son has several of them, I have at least one of them myself.
I have to agree with my friend who suggested a difference in philosophy exists, because every special education teacher, every physician and specialist, every therapist, every other parent of a child with special needs and our special needs adoption case worker, as well as every other mentor or advocate I’ve known, emphasized that people with disabilities, people with special needs should not be treated any different than any other person, we should have the same expectations for them as we would any non-disabled person.
I was instructed by our adoption caseworker to never ‘feel sorry for’ our son, never allow him to ‘get away with’ behavior that wouldn’t be acceptable for a non-disabled child. As a result, we taught him to be considerate of others, he has manners and is polite, he treats people with respect and he knows that he should think about whether what he’s going to say to someone else would hurt his feelings if it were said to him. We work on these skills all the time, just like most everyone else does.
One of the principles of the Independent Living movement is that people with disabilities don’t want special treatment or consideration, they don’t want privileges, they don’t want lowered expectations, they want the same opportunities as everyone else has. They may require reasonable accommodations that will allow them to participate like everyone else, but they want equal treatment.
There are services available, which my son is utilizing, that work on developing appropriate socialization skills, communication skills and etiquette in public settings as well as the work place. These services are adjusted to take into consideration the severity of the conditions of the individual. If someone has severe or profound disabilities the method of instruction is different.
When I was first learning to advocate for the disability community and particularly children with special needs I was presented with this realization to consider, “There are no special needs banks, no special needs grocery stores, so we have to teach our children how to survive in this world, and hope that in the process we educate the non-disabled community so there will be more understanding. We can’t expect others to know how to communicate with, how to interact with our children, we can’t expect people to know what our children’s needs are, we need to teach our children how to successfully navigate the world around them.”
This particular saying, “Before you assume, learn the facts. Before you judge, understand why. Before you hurt someone, feel. Before you speak, think.” had meaning for me because we used something very similar to this when doing sensitivity trainings with non-disabled people, asking them to consider learning about disabilities, understanding why someone with disabilities might behave or sound different, to try to imagine how a person with disabilities might feel and to consider how one’s words might hurt someone living with a disability.
The disability community, like any other community or group, includes many different people with many different ideas about what it means to be disabled. There are different levels of acceptance, different styles of adaptation, different coping mechanisms, even among people with the same diagnosis, condition or disability.
The philosophy I was taught works for me, has worked for my son, allowed me to assist a number of people to understand that they are not defined by their disability, that it is up to them how much their disability impacts their life.
I can only speak for me and my experiences.