Sometimes I mourn the family I would like to have been part of. Joe and I, when we got together at 16, didn't know what to do with our relationship. It certainly couldn't be public, so it became very, very private. We built a life with walls. We built a life in secret. We built a life of truth, together, and of lies in the world. There was no 'gay pride', there was no 'tolerance' or 'acceptance'. People used harsh words like 'gearbox' and 'pansy' and 'fruit' and ... well, the list is endless.
We both wanted to be part of our families but didn't know how to be. We anticipated rejection, maybe unfairly, maybe with reason. Everyone thought we were the best of friends, and we were. Everyone thought we were a couple of poor university students sharing apartments, and rides, and groceries - they just didn't know we were also sharing a bed. Our silence caused, within us, a deep resentment. I watched my brother marry publicly, I watched the celebration, I watched society sanction, I watched the church, that I attended and he did not, bless. And I felt so alone in my cone of silence, it was hard, really hard, not to hate.
Our lives were schizophrenic. A public face, a private life. Everyone lives like that, I know, but the degree of difference between those faces usually isn't so dramatic. We lived a life with friends, we dived into the gay lifestyle with abandon, we created a family around us. A family that loved us back, all the while calling home to 'mom' and talking about work, about a life that must have sounded dull and lonely. Never being asked about Joe, always being asked about Joan - a dear friend from University. My heart breaking when hearing the faint hope that one day I'd talk about love and marriage to one of the fairer sex slowly die in that voice on the other end of the phone.
Slowly silence took over, chat became empty sound, spending time but investing nothing. Difference never spoken about is difference not accepted. Pretend normalcy smothers natural diversity. In the end, nothing lives but shame. And, of course, silence.
"I never speak to my son about his Down Syndrome."
"To me my daughter is normal, I do not see or acknowledge a disability."
I am sorry but I think though 'pride' and 'acceptance' are the message, neither are the source of this kind of statement. Shame is. Shame leads to silence and pretense. Shame believes that difference, that disability is wrong, and needs to pretend it away. And slowly lives diverge. Slowly relationships become about maintaining pretence rather than building bonds. People live in the same house with wildly different lives. People share space but never meaning. People see each other as needing protection more than love. So, love, dies.
Having Down Syndrome means something. Having Cerebral Palsy means something. Rolling not walking means something. Learning slowly not quickly means something. It doesn't mean what all fear, and what it does mean is as often cool as it is frightening. Loving someone, as is, out loud, is powerful. Loving out loud is defiant. Loving out loud is, perhaps, the most potent political statement that can be made. A statement with historical precedence. "This is my Son, whom I love; with him I am well pleased." Even God needed to proclaim, out loud, love.
Every gay pride parade I am in or I watch, I cry. When I see 'I love my gay son.' 'I love my lesbian sister.' I cry. Love out loud. Love out of the closet. Love without reservation, without the need of pretense, without a longing for normalcy. Listen carefully and hear the death rattle in the throat of shame. Listen carefully and you can hear the distinct sounds of joy. These parents, these siblings, these families, NEED to proclaim their love. They were taught in different times to feel different things, but they are here now. And they will be seen, they will be heard, they will be identified. They say to the world, 'I claim my child,' they say to the child, 'I claim YOU.'
"I love my daughter with Down Syndrome."
Funny how many parents say that publicly on blogs.
"I love my son with Cerebral Palsy."
Funny how many parents say that to neighbours and friends.
"I love you, you my kid with disabilities, my kid with differences, my kid with extra chromosomes, my kid with his ass stuck in a wheelchair."
Funny how often that is not, quite, what is said.
Silence.
There is a terrifying result of silence.
Our lives were schizophrenic
ReplyDeleteYou sure that's a comparison you want to make?
Beautiful post. I agree completely. The difference needs to be talked about so the child knows they are accepted the way they are!
ReplyDeleteI hope that relationship with your parents improved eventually.
I love the theme of this post.
ReplyDeleteI've done a LOT of things wrong as a parent, but one thing I got right was to tell my kids the absolute truth about their disabilities. As I grew up, I developed the reputation of being "irresponsible", "lazy", "not living up to her potential", etc, etc. Somewhere in my mid thirties (at the same time my kids were being diagnosed) I received another label. Attention Deficit Disorder. It was such a relief to find out that there were solid reasons why I felt like I was different, and even though I KNEW I was trying just as hard as everyone else (probably harder) there were just as solid reasons as too why I forgot to take the library book with me when I had gone all the way to the library for the sole purpose of returning that book on time - and it wasn't because I was irresponsible! I just had a different kind of a mind. One that had to work a lot harder at remembering to do things, and maybe had to take two, or even three trips back to the library to get the job done.
When the differences my son was experiencing turned out to earn him the label of "Asperger's" I was determined that he would not suffer unduly (as I did ) because of ignorance. I included him in everthing I was learning about the autism spectrum, focusing, of course, on the positives, but addressing the challenges head on. "I'm so anxious!" That's because you're on the autism spectrum, Dave, so you have to work a lot harder at staying calm and in control. Here's some strategies that might help. "Why are they picking on me?" Because you're an Aspie, Dave, and they just don't know how special you are. They don't get you yet, but this or that might help...
David just graduated from Queen's with a degree in engineering and is going back next year for his master's. Because we held up a mirror in such a way that he would be able see his strengths as well as his challenges, we have been able to watch him grow miraculously and exponentially in his ability to recognize what supports he needs and to develop the skills to build them around himself. He is now 23 and will be living completely on his own this year, supporting himself financially, and providing for his own needs. (Hallelujah!) There is no frustration about why certain things are difficult for him (quantum physics is a breeze, but to get to a class in the building just across the street, he must walk 20 minutes out of his way and back again, just so that he can be guided across by the traffic light). It's very gratifying to see David's acceptance of himself and his indifference to whether or not others understand or accept him for who he is. He is such a special guy!
David so thoroughly accepts himself that he is deeply offended when well-meaning people at church have offered to pray for his "healing". He is not only who he is but he likes himself just fine, thank you very much.
Kate, who commented above, is absolutely right. "The difference needs to be talked about so the child knows they are accepted the way they are."
I love my son with Asperger's.
And Dave, just in case you didn't know, I sure do love my gay friends, too.
Thanks for the reminder to speak the things so easily silenced.
ReplyDeleteAn excellent post.
ReplyDeleteWe explained to Ricki about her Down synrome when she was all of about 5 years old.
I am not sure that silence is necessarily always born in shame. But I do think that silence can quickly breed shame.
ReplyDeleteI was born deaf, a fact that my parents talked about with me openly. And so I grew up claiming my deafness, and my affiliation with the culturally, signing Deaf community with pride and confidence. I also grew up with attention deficit disorder but was not diagnosed with this until age 26. So instead of growing up learning about my attention deficit disorder and learning to understand what it did and didn't mean for who I was and what I could accomplish in life, I grew up getting the message that I was irresponsible or lazy or too much of a perfectionist. But like Susan, I didn't procrastinate things because of irresponsibility or have difficulty maintaining a clean home because of laziness or get stuck starting my papers because of perfectionism. My brain was wired differently. I know this now, and have had enough years to figure out what this means. But because no one knew to explain things to me when I was younger, I wasted a lot of time and psychic energy berating myself and fighting my natural tendencies instead of forgiving myself and finding a better work-around solution for the things I couldn't do in the same way that everyone else did them.
The silence around my attention deficit disorder didn't begin in shame, only in plain ignorance--no one knew back then. But the silence still bred some unnecessary shame just the same.
In other words, ditto to what Kate said.
I really appreciate your post today. Thank you.
ReplyDeleteI'm so thankful that my parents have always accepted me. I was diagnosed autistic at 15, *after* self-diagnosing, because my parents accepted me so thoroughly that they couldn't see why anyone would think I had a disability. I was 12 when a principal suggested I might have Asperger Syndrome, and my parents were offended by the thought that someone could think being as quirky, interesting and unique as I was constituted a disability. Only once they found out about disability pride did they accept the label of autistic for me.
ReplyDeleteAnd now, my mother tells me that she's glad she has an autistic daughter. My parents brag to other people that their autistic daughter is writing fiction, is taking psychology in university, has friends, loves cats, and *never* do they suggest that my accomplishments are despite my disability. My father readily admits that he is probably undiagnosed autistic. My brother defends me to his classmates when they make fun of him for having a weird sister.
I have never doubted that, no matter how cruel the outside world can be, my family loves me unconditionally.
One of the first conferences I went to after my daughter was born was hosted by an amazing woman, who was very to-the-point, and very no nonsense. She opened her speech with this line, "Tell your kid he or she has a disability, because if you don't someone else will." It should be as easy to talk about as what is for dinner, as simply, and as important, and non-important, as the colour of our hair.
ReplyDeleteI worry sometimes that we "enlightened" parents, who advocate so fiercely for our children, who understand the benefits of inclusion, who know the laws, who never take no for an answer for our kids are doing one thing wrong...
Are we working too, too hard to "normalize" those with disabilities without embracing who they are, fully, non-conditionally, completely? Do we put our wishes for them ahead of their own, just as your own mom did when she asked about Joan...
Dave, you deserve to be loved and respected, not despite the fact that you are gay, or even because you are gay, but simply because of who you are as a person.
"Difference never spoken about is difference not accepted."
ReplyDeleteThat is hitting me in my heart. Thank you.
Also I today "heard,""THIS is my beloved Son."
I think God says that about each of us, proclaiming to the world that what he has made is good--the whole package.
"This"--all of the person--with all of that person's attributes--is a work of art.
First of all, schizophrenia is about delusions and the sense giving false information. It may be a kind of brain damage, it may be some neurotransmitter problem. They still don't know what's going on. It's treatable in many, and it's a scary, scary thing.
ReplyDeletePeople frequently confuse schizophrenia with what is now called Dissociative Identity Disorder (DID), which used to be called Multiple Personality Disorder (MPD), where people appear to have more than one conscious "identity" within. Without getting into all the debate about DID, there is a lot of data to show that it is very rare disorder. And there is a LOT of debate about it.
That said.
Family is what you make of it. I have as much non-biological family as I do the "regular" kind. Blood may be thicker than water, but some bonds trump blood.
That also said. :-)
I think the "I don't see it" is one of the worst kinds of bigotry. Our differences are what makes us special. I know someone who insists they are not racist because "I don't see skin color, I just see people." I cannot get them to understand that it's not what you see or even what you might think, but what you do and say that defines bigotry. See a person how they are, but don't judge them based on how they differ from you.
and now I've said enough.
What a strong, beautiful, eloquent post.
ReplyDeleteThe message in this post brings to mind the famous quote from Pastor Martin Niemöller...
"THEY CAME FIRST for the Communists, and I didn't speak up because I wasn't a Communist.
THEN THEY CAME for the trade unionists, and I didn't speak up because I wasn't a trade unionist.
THEN THEY CAME for the Jews, and I didn't speak up because I wasn't a Jew.
THEN THEY CAME for me
and by that time no one was left to speak up."
Speak up for those you love, express your love, otherwise who will be there to speak up for you.
How about that Brian Burke?
ReplyDeleteGot chills reading this Dave. I'm so glad things have changed, although it's clear they've still got a long way to come.
ReplyDeleteI love this blog... in a way: I like it, it makes sense...
ReplyDeleteAnd I do love my daughter with Downsyndrome and tell her everyday!
and i will share with her what it means to her to have ds, as soon as she is able to comprehend.
(now she is 2,5)