Until Eternity

When I go to a funeral for a person with a severe disability, there is always someone who thinks they are helping by saying: “She is no longer suffering–even if the person wasn’t sick.” or “Now that he is in Heaven, he will be able to walk.” Or, “Finally Jenni will be able to talk about all those things she was trying to say and we could never understand.”….

I don’t know.

In fact, no one knows. Heaven is a place where we can hope or speculate–but the people who cross-over are as silent as many of the people we love.

There is no way for us to really communicate until eternity. But, it makes me wonder:

What is Heaven?

Is it a place where we are surrounded by God’s love,
and our family and friends?

Are wars and battles replaced with caring communities and friendship?

Are people who were old, now young again?

Are people who could not walk and talk, now dancing and singing with the Angels?

Are people who have suffered from abuse and illness, now strong?

Will we know the answer to life’s biggest questions and mysteries–like WHY?

Anne McDonald

Anne McDonald died Oct. 22, 2010. She was never able to say a word, or walk, or physically care for herself. She lived in Australia, on the other side of the world from Cincinnati, Ohio. So how is it that she influenced the lives of Aaron and our family? Anne was the person who first introduced Facilitated Communication to the world. She and Rosemary Crossley met with Doug Biklen, Anne Donnellan and others who had to rethink everything we knew about communication and movement disorders in people with cerebral palsy, autism and other physical and intellectual disabilities.

Anne was the person who cracked the paradigm forcing the professionals to throw away their tests and not judge people by how they looked and acted. She was the one who began the movement for the freedom to communicate. She rocked the world of disabilities.

Here is the official press release from the Australian Government:

We mourn the passing of Anne McDonald, an author and advocate for people with disability. Her death in Melbourne on Friday is a sad loss for the disability community and all Australians. Born with severe cerebral palsy and unable to walk, talk or feed herself, Ms McDonald spent 14 years in a state institution after she was wrongly diagnosed. With the aid of disability advocate Rosemary Crossley, Ms McDonald eventually learned to communicate and when she turned 18 she went to court to win her freedom from the institution. She co-authored the best-selling book about her struggle, Annie’s Coming Out, which was later made into an award winning Australian movie. Ms McDonald also completed a degree in humanities, becoming one of the first people with severe cerebral palsy and no speech to obtain a university degree in Australia. She dedicated her life to advocating for the rights of people who can not talk and was recognised for her efforts with the National Disability Award for Personal Achievement in 2008. Ms McDonald was a pioneer in the field of disability rights, courageously taking on landmark legal battles that have changed the face of disability law both in Victoria and across Australia. She also published articles and gave presentations at conferences around the world, sharing her inspirational story with others. Today our thoughts are with her family and friends, as we mourn the passing of a truly amazing Australian.

So that’s the official story. But, like everything about this woman, you must hear her own words. She writes about her hell in the institution (click here):

This is the speech Anne McDonald delivered at Parliament House in 2008 when she won the Australian National Disability Award for Personal Achievement.

“I spent my childhood and adolescence in a state institution for severely disabled children. I was starved and neglected. A hundred and sixty of my friends died there.

I am a survivor.

That isn’t a heroic achievement. Anyone who was put into a large institution in the times when large institutions were sugarcoated concentration camps was as much a hero as I was.

They stayed alive when they could and they died when they couldn’t. Such heroism is easy to achieve in giant barracks where the prisoners stay alive through being cheery enough to attract a staff member to give them that vital extra spoonful of food.

I wasn’t exceptional in anything other than my good luck. I was selected for an experiment.

Rosemary Crossley wanted a subject for her Bachelor of Education literacy project. She chose me. The aim of the experiment was to see if I could make gains in my tight-armed pointing to blocks with different colours on them.

Rosemary found I could point to colours, then to words, and then to letters.

She taught me to spell and to make my wishes known. I made known my wish to leave the institution, and then all hell broke loose.

I went to the Supreme Court and won the right to manage my own affairs. Unfortunately, that didn’t mean that the institution offered the other residents the right to manage their own affairs.

I was an exception. Through no desire of my own, I was out front in the struggle to get rights for people without speech.

I tried to show the world that when people without speech were given the opportunity to participate in education we could succeed. I went to Deakin University and got myself a degree. That, too, was seen as an exception.

I gave papers and wrote articles on the right to communicate. I set up a website to show that there was hope for people without speech. People thanked me for being an inspiration; however, they didn’t understand why there weren’t more like me. They continued to act as if speech was the same thing as intelligence, and to pretend that you can tell a person’s capacity by whether or not they can speak.

Please listen to me now.

The worst thing about being an inspiration is that you have to be perfect. I am a normal person with only normal courage. Some people who should know better have tried to give me a halo. Anybody could have done what I have done if they too had been taken out of hell as I was.

If you let other people without speech be helped as I was helped they will say more than I can say.

They will tell you that the humanity we share is not dependent on speech.

They will tell you that the power of literacy lies within us all.

They will tell you that I am not an exception, only a bad example.

Many are left behind. We still neglect people without speech. We still leave them without a means of communication. It should be impossible to miss out on literacy training, but thousands of Australians still do.

As Stephen Jay Gould wrote,
“We pass through this world but once. Few tragedies can be more extensive than the stunting of a life, few injustices deeper than the denial of an opportunity to strive or even to hope, by a limit imposed from without, but falsely identified as lying within.”

I don’t know what Heaven is like. But if anyone deserves a reward for her life on earth, and happiness for all eternity–it is Anne McDonald.

God Bless Anne.

Thoughts? Questions?

What do you think about Heaven? Do you have any stories about Anne, Rosemary or Facilitated Communication?

Keep Climbing: Onward and Upward

All my best, Mary