Tag Archives: Burden on society

Why I am petrified

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family2004

The whole pack was together then

“He says what we’re thinking.”

Hearing that petrifies me. I feel a panic rising and sometimes it hurts too much to move and I think I’m turning into petrified wood.

See, I’m one of those people who’ve had complete strangers come up and tell me my child would be better off dead. I’ve heard them refer to him as a “pathetic little thing” as they walk by. When my son was born with severe disabilities that affected every single part of his body, I found I pretty much had to prepare myself to hear and see anything when we left the safety of our home. When I wrote a letter to the editor of the Oregonian describing the need for services for children with disabilities many years ago, back when the paper published a letter writer’s home address, I got a letter in the mail telling me I should have had an abortion so I wouldn’t be burdening society with his existence. I saw people mocking my son’s unusual movements behind his back. I heard people laugh at him.

Over the years, especially after the passage of the Americans with Disabilities Act, fewer people said cruel things and the mocking diminished. Or went underground. I chose to believe our society was becoming more accepting of and kinder to those born with disabilities. And that we had reached a kind of civic agreement that society would include them because it was right and just and good for everybody. (Even then I was admonished by a boss to stop bringing up my son as an example of lack of equity.)

A few months ago, I watched a presidential candidate openly mock a person with disabilities, to the delight of the crowd. Later I saw a video that captured someone kicking a child in a wheelchair being removed from the same candidate’s political rally, while those standing nearby cheered.

“He says what we’re thinking.”

The candidate who made fun of the body position of the person with disabilities will soon be president. He will have the support of both houses of Congress, whose leadership have made it clear for years that they want to reduce/end/privatize government programs designed to help people who can’t equally compete in the system that promises to provide “liberty and justice” for all.

We paid the extra costs we faced to accommodate our son’s disabilities (e.g. an addition to our home with a wheelchair accessible bedroom and bathroom, a 70-foot concrete ramp, vehicles that would accommodate lifts, etc.) with no government assistance whatsoever. We did this because we knew our son was as valuable as any other person on earth and we would do whatever it took to give him a wonderful life. We gladly made sacrifices to do without things other families had. But in order to do this, he had to have access to medical care that we could not begin to afford. Insurance companies were allowed to exclude people with pre-existing conditions then. When you are born with his disability and need surgery within hours to save your life, you are never without a pre-existing condition. The marketplace does not take care of people with severe health care needs because they are not profitable.

The Affordable Care Act (Obamacare) prohibits this and makes insurance available to people who used to be assigned to high risk pools that were outrageously expensive and inadequate. Publicly funded health insurance like Medicare and Medicaid is efficient and affordable because it does not have to cover exorbitant executive salaries, huge advertising budgets, and maximize profits to shareholders. That’s why large group participation and government requirements are needed for those the marketplace will not support.

If these health care needs are not met, people die. In other words, they are aborted after they are born because their existence is deemed too much of a burden to society.

I lost my son nearly two years ago, as his health challenges were finally too much for his body. I miss him so much I can hardly make it sometimes. There is a hole in my heart that will remain the rest of my days.

I’m not the only one who misses him. While he was here, he made the world a far better place.

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The day Free Geek celebrated Blaine’s 10th anniversary

Blaine worked at Free Geek for more than 11 years, teaching people who couldn’t afford to buy computers how to build their own for free. This is what the person who was his supervisor wrote me on what would have been by son’s 37th birthday last summer:

“Not only did it turn out that Blaine was interested in teaching, but what was incredible and so out of the ordinary at Free Geek at the time, was the way that he did it.  He was so generous with his knowledge, as well as so kind and patient.  He never belittled a person for not knowing something, or for making a mistake.  If someone needed extra help, or extra time, Blaine never was frustrated. He stuck by that person and worked with them, with kindness and encouraging words, until they got there.  He was open and giving with all that he knew. 

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The Blaineversary cake

 

Blaine quickly became a star. Volunteers loved him. They felt comfortable asking questions and asking for help, when in the past they would often get gruff responses, or actually yelled at for doing something incorrectly.  I know it to be true that Blaine was the number one factor for volunteer retention in the Build Program. Not only that, but with his kindness and generosity the culture at Free Geek started to change. People started just being nicer to each other. When people are treated with kindness, they too start being kind to others. It is infectious. This is what Blaine brought to the organization.  It became a more welcoming and kind organization. It became a place where anyone could come to learn and not be afraid to do so. I have heard you say how much Free Geek meant to Blaine, but I want to make sure that you know how much Blaine meant to Free Geek, the organization.  He changed it in such a profound and positive way. He made Free Geek into the organization that it set out to be.” 

So you see, he and others with disabilities are not a burden on society. Mocking them is a travesty and should bring so much shame to the mocker that he dares not show his face until he apologizes and convinces us it will never happen again. If given a chance to be, people with disabilities can make all of us better. Just like all of us can. But what kind of world do we live in when a mother feels she has to justify her son’s existence so he gets to have one?

The world where “he says what we’re thinking” now feels like a death sentence.

People with disabilities are not the only ones petrified by “he says what we’re thinking.” I write this because it is what I know best. Please listen to all the petrified. Think about what they are all hearing and feeling. You may not be in any of these vulnerable positions right now, so please find it in your heart to imagine if you were.

I can’t see and hear “he says what we’re thinking” any more right now. To survive, I have to take a break from television, Facebook, twitter and other places that scare me to death. I hope to be back sometime, but for now, I just can’t anymore…

 

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