The end of the month is here. I had written these thoughts that I have to share today weeks ago but then misplaced my notebook. I’m choosing not to think about the pages and pages of my heart words that were sitting at the coffee shop for the eyes of strangers; if my words were read, may they glean what they needed.
October seems to be an awareness month for many things and most are things that we could all use more awareness of. It is month that some have devoted to raising awareness for specific health needs and disabilities. I had already written this when my friend Krista wrote about Down Syndrome Awareness month. Krista is the mama of two children and her precious daughter, Ella, was born with an extra chromosome. I have learned so much from what Krista has shared on her blog, One Beautiful Life, about her journey as a mama to a child who has Down Syndrome.
Gesturing to an unusually short woman, she half squealed, “Mama, look at the little lady, she is sooo cute!”
I think that when we have small children, we know that it is only a matter of time before they notice someone who is significantly different or who has a disability. Because children are uninhibited in the way that most adults are, it could potentially be embarrassing. I was prepared but thrown off guard because at that point, I hadn’t noticed the person whom she pointed out.
Since that time, one daughter or the other has noted other people and asked questions about people in wheel chair or using canes etc. In my desire to quide and explain well to them, I have been taken to a deeper level of considering my own actions and treatment of those with disabilities, be it physical or cognitive differences.
I have provided care and therapy for those who have both cognitive and physical disabilities. I’ve never once doubted that each person whom I worked with/for deserved the same care and dignity that any one would. There were times when I felt the children were being given a much lower expectation of their ability than they deserved. I would say that I perhaps much more at ease with the differences of others than many.
But in all that time, I never realized that the people whom I was providing care for in basic necessities were fully capable of offering me a meaningful and lasting friendship. I never understood that.
When I started writing this it was because I was excited and encouraged to see the compassion and understanding that my daughters were demonstrating as they expressed things like how glad they were that there was a wheelchair accessible bathroom, or that one of the lads in town could join in at various events because he had his wheel chair. But it took until now for a couple of things to shake my awareness and even complacency if you will. I’m going to try to keep them brief but I want to share three things that have changed my perspective.
“We can’t be friends because she doesn’t talk to me”. These were Aneliese’s words as we talked about some of the children that we play with. As I asked a few questions, I learned that she felt that this particular little girl didn’t want to be friends because she would never respond. I hadn’t thought to explain to Aneliese before that point that she wasn’t able to speak in the same way. Since our conversation and subsequent ones, Aneliese has been coming to understand that friendships require patience and learning to communicate. While she still has a hard time with not being able to ask her little friend questions, she no longer doubts that they can be friends.
My friend Krista shared these words in her thoughts on her daughter beginning school:
Wanted: Friends ”Friends needed for a little girl with Down Syndrome. She is very fun-loving, non-confrontational, sweet and caring. Loves playing with dolls, colouring and long walks on the beach.” (Read the rest of the post here).
I’m in the stage of changing how I view relating to those with disabilities. To not define them by the things that they are un-able to do but to view those things as just part of the complexity of who they are.
If I’m being perfectly honest, I’m not where I’d like to be. For example, I can’t say that I would view a woman my own age with Down Syndrome as a candidate for friendship. Oh, I’d be friendly and chatty, but I wouldn’t try to discover the thoughts of her heart or believe that we might be kindred spirits. I’d still feel uncomfortable in some ways. I wish it weren’t so because I honestly don’t believe it needs to be. I hope that my girls will seek out those friendships, not because they are doing anyone a favor but because they truthfully go beyond differences to find what is kindred.
I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. That is an exerpt from a letter written by Special Olympics athlete and global messenger John Franklin Stephens in response to a political person’s use of the R-word. It is quite possibly one of the wisest, carefully worded letters that I have read. I have thought of it often since reading that as well as other words of wisdom that he offers and I have learned from it. It has sparked the question in me; could I learn to be one of those who offers the deepest of myself by slowing down and listening and learning to truly communicate? Could I go beyond the bounds of what society counts as normal to learn to see people for who they really are?
I feel like I give disclaimers a lot but I want to say again that my thoughts here are not all encompassing; you are actually getting a glimpse into my processing. I realize that there are varying levels of cognitive abilities and I don’t pretend to have a deep understanding of how this works. I do however know that there is a tendency to assume that because someone who, whether due to Down Syndrome, Autism or the many other difference that people experience, communicates or processes differently, than we do that we are unable to communicate or relate, . I also know that this disconnect can happen with those who have physical disabilities but not cognitive. I am currently being challenged with a different view and I hope that you will find yourself being challenged as well.