Sam's primary form of transport - other than her very fast Beamer - is her wheelchair. She can walk with crutches "like a Thunderbird", but the wheelchair has become her legs for any distance. She tells absolutely side-splittingly funny stories, sad stories, angry stories, frustrated stories. She works tirelessly as a voice in the disability wilderness. Apparently she sleeps from time to time.
What I find astounding is others' judgments of her, particularly the hateful, hurtful comments made out of sheer stupidity or ignorance or fear. Some appear not to be able to grasp the fact that she is a parent, a carer and critic of the disability "industry" and has multiple medical conditions herself. And, golly gosh, she doesn't want to be cured...she just wants the rest of us to be supportive and thoughtful and not add to the discrimination that slaps every disabled person in the face every day. Doesn't seem like she's asking much to me.
I experienced a similar reaction from the general public after my series of pregnancy losses. I had six pregnancies, involving seven babies, with three surviving children. All but one of my babies died after twenty weeks gestation. From different reasons before and after birth.
So when it became clear that I wanted to attempt another pregnancy after my twin girls were stillborn, I became a pariah. Their voiced opinions took my breath away. I had one live kid - I should be so grateful. All I was doing was bringing another poor little soul into the world (who would either die or have some ghastly Defect) , wasting taxpayers' money and clogging up an obstetric bed that should be saved for a more deserving woman. How could I even contemplate such a ridiculous and selfish idea?
My final two pregnancies were amongst the most stressful events I have ever lived through. Callum was delivered at thirty-six weeks, due to foetal distress. He was hauled pink and roaring out of me. He was alive and he stayed. Vanessa had a sibling to boss. I had the relieved joy of a wriggling, breathing baby again.
Alex was never meant to happen. And I was nauseated from the moment I was one second pregnant. This lasted until I had an ultrasound at seventeen weeks. All appeared well. As my first born son, Christopher had been born with a complex heart defect, premature lungs and other problems that killed him, I was referred to a cardiologist for a foetal cardiac ultrasound. Three days before Christmas 1990, I was told my newest baby had congenital heart disease and I was asked if I wanted to terminate the pregnancy.
I chose to continue the pregnancy. I would be damned if I would cause this baby to die. Even knowing the consequences.
And so the comments and the looks started again. How could she...? I gritted my teeth and hung on until the pregnancy was over and Alex was born.
He was hauled pink and roaring out of me as well. And yes, until we took out private health insurance, he cost the taxpayers for his treatment. And then, horror of horrors, he was found to have developed Autism as well.The hardest part for me was learning all the new medical jargon.
I can't imagine a world without my two sons. Or my daughter, who is also autistic. And not a day goes by that I am not advocating for them - all. And for my husband, who has multiple health issues. I have recurrent depression. OMG, I'm one of them, a disability carer who has a mental illness. I'm another of those outspoken vocal critics!
Getting back to Sam and the particularly dreadful judgements cast in her direction, I hope this one blows her naysayers out of the water. Sam, who has a disability herself, must have had sex at least six times in order to have her children....Now that's food for thought.
Two of the people who float my boat - the legendary Samantha Connor and my beloved Michael.
PS did I mention Sam loves frocks, classy shoes and bright hair colours?
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