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Archive for October, 2010

Until Eternity: Anne McDonald

http://www.deal.org.au/anne-mcdonald-1111961-–-2210-2010

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

Technology Act: Just for the Deaf and Blind?

21st Century Communication and Video Accessibility Act

No one in my family is Deaf or Blind. So, why should I care that President Obama just signed new legislation forcing media and technology companies to make their products accessible?

Isn’t this just another example of more government rules and regulations? Big Brother intruding into private business? Government ruining all our lives with more paperwork and administrative costs? Government taking away our freedom?

New Laws don’t just drop from the satellites.

I was not involved in the Technology Act. But I have been involved in several other pieces of legislation. And believe me; the process is both tedious and thorough. As it should be!

Before any piece of legislation goes before the Congress and ultimately the President, there is a process. In my opinion, there are usually so many stakeholders and differing opinions it is a miracle anything gets done.

But this is a democracy–government by the people, for the people. So the people of all genders, races, economic groups, political affiliations, and all degrees of ability or disability are involved. Finding consensus on the ideas, then the language, the drafts, the compromises, the redrafts… everything takes forever. This is serious business.

Which makes sense. If we have rules and regulations for a simple baseball game, then certainly any legislative body needs a fair playing field to hear the concerns of its citizens.

I’ve been involved in several legislative committee meetings and public hearings. And down to the stop watches for speeches and comments–every procedural safeguard is specific.

Is there a need? What does the current law say? What have the courts ruled? Is this new law consistent with the constitution? How many people will benefit? What are the costs? What are the downsides? How will this impact business? Is the proposed technology available and possible?

When the ADA (Americans with Disabilities Act) was passed in 1990, it cited the fourteenth amendment of the constitution and assured people with disabilities the same protections as every other citizen of our country. At first there was tremendous backlash. How dare the government force us to allow people with disabilities into our private businesses? I spoke about some of our family experiences before ADA in my article “America the Beautiful” (click here). I also spoke about the 20 year anniversary of ADA (click here).

This technology act was not necessary.

This technology act would not have been necessary if the people and companies would have voluntarily served the needs of people with disabilities under the letter and spirit of ADA. Imagine over 60 million prospective customers who needed this modified technology–and business ignored them?

They forced these citizens and their families/advocates to have to get a congressional act passed because the companies were too stubborn, or narrow-minded or whatever. It could have been different. It could be different the next time businesses find another loophole and we are forced to seek yet another piece of legislation.

According to the Associated Press (click here)

Nondisabled people stand to benefit, too. They may find the devices and screens easier to use.

The law sets federal guidelines that require the telecommunications industry to:

_Make getting to the Internet easier by improving the user interfaces on smart phones.

_Provide audible descriptions of on-screen action to help the blind more fully enjoy television.

_Add captions to online TV programming to help the deaf.

_Make the equipment used for Internet telephone calls compatible with hearing aids.

_Add a button or other switch to television remote controls for simpler access to closed captioning on television.

Every time I go into a restaurant and see the closed-captioning words scrolling across the screen–I think of ADA. Every time I see a parent push her baby stroller up a curb cut, or see shopping carts going down a ramp, or customers riding an elevator–I think of ADA. Every time I go into a restroom and there is a stall wide enough your knees don’t touch the door–I think of ADA.

The difference between a person having a disability and being handicapped (click here) often is related to the technology and adaptations available.

People with disabilities have helped Velcro come out of the therapy closets, they have helped zippers be sewed into pants, and they have influenced packaging which makes it easier for all of us to open jars and bottles. The artificial replacement arms, legs, hips and other prosthetics were all first designed for wounded soldiers or people with disabilities–now the general population has better lives because of their pioneer efforts.

Who knows where the technology advances from this legislation might lead us? People who are “temporarily-able-bodied” today, might find at some future time, they need a cell phone or TV changer that has the modifications. It will be there because thousands of advocates worked to make it happen.

As our USA population is aging and needing more modifications, accommodations and universal design, we need to thank the hard work of people with disabilities, their families and advocates. As President Obama said, “They refused to accept the world as it is. The Disability Rights Movement is intertwined with American Progress.”

So, yes. This is more government regulation. Thank God and thank the USA.

What do you think? Make a comment.

In the last month we have seen the passage of Rosa’s Law, the Christopher & Dana Reeves Living with Paralysis Law and this Technology Act. Is the government acting on behalf of its vulnerable citizens, or is it over-governing and taking away our freedoms?

Keep Climbing: Onward and Upward.

All the best,
Mary

Day 29 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC

Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

Drinking Beer and the Dignity of Risk

Drinking Beer and the Dignity of Risk

Above is a picture of Aaron drinking a “cold one.” He’s 35 years old–so he’s well past the drinking age. But is this right?

Beer and Spaghetti

The only time my husband drinks beer is when we have spaghetti for dinner. I don’t know if it is a tradition, a ritual, a family memory, or just some sensory combination he thinks tastes good. He can’t explain it.

The last time we were eating spaghetti, Aaron reached over and picked up Tom’s frosted mug and took a sip. Tom and I both watched his eyes get big with surprise–it was not what he expected.

Now, maybe we are horrible parents that we would let our son, with severe disabilities and the label of autism, drink an alcoholic beverage. After all beer is not recommended on the food pyramid. But over the years, we have tried to allow Aaron to have what the professionals call, “the dignity of risk.”

Dignity of Risk

The concept of “dignity of risk” is we allow our children, and ourselves, to make choices and the accompanying mistakes, failures… because this is how we learn. This is how we build our self-esteem and self-worth. Our Dignity.

Of course, we build a safety net into the situation. For instance, we would never allow Aaron to drink a bottle of cleaner he found under the sink. We would not allow him to get drunk. We would not allow him to take a glass of alcohol from a stranger.

Here is a related story about Aaron and his niece Isabella. (click here) Isabella’s safety was a priority. But with supervision, Uncle Aaron could have the dignity of pushing her in her stroller.

This is a difficult concept for many people to understand. Some people think Tom and I are reckless parents. An equal number think we are “hovering” parents and too protective. But hey, if you are a parent of a child with a severe disability, you know you can’t win. You have to do things as you see them.

Dignity of Risk and School

When Aaron was about 12 years old, one of his daily jobs was to help pack his lunch for school. He couldn’t do the whole job, but we worked with him, and over time, he learned to get a soft drink can and put it in his lunchbox.

This was a great goal because Aaron is always thirsty and loves pop. Getting a pop can and putting it in his lunchbox was a task that was repeated every day, so he got lots of practice. Aaron has physical balance issues and hates to bend over. The physical therapist recommended we put the pop on the middle shelf because it would strengthen some muscle or another….

It took Aaron a long time to master this goal, but he did it. It became part of our daily routine. And a source of pride.

The Dignity of Risk and Unexpected Circumstances

One day about noon I got a phone call from the school principal. He said, “Students are not allowed to bring beer to school.” Then he paused and burst into laughter.

“What?” was all I could say.

The principal then described the lunch scene where Aaron is sitting on the cafeteria benches with about a hundred other junior high school kids.

Aaron opens his lunchbox, and with his peanut butter and jelly sandwich and apple slices he pulls out a Bud Light. (I couldn’t make this up.)

Of course, the crowd went wild. By the time the teachers could figure out what the pandemonium was about, Aaron was a school legend.

Thankfully the principal knew Aaron and he wasn’t suspended.
Apparently, Aaron didn’t put his normal soda in his lunch box.

So then, was this a colossal failure and we stopped allowing Aaron to pack his lunch? No, his daily goal was amended to include sorting and classifying the silver cans before he put one into his lunchbox. Great learning opportunity, not failure.

Spaghetti and Beer

On the night of this picture, Aaron gave the beer back to his dad. We thought that was the end of it, but then he picked up the beer can, put it to his lips and said, “AHHHHH”.

Guess the spaghetti and beer tradition is genetic.

Virtual Beer for the first comment:

What do you think of the “Dignity of Risk”? Do you have any stories to share? Embarrassing Learning Experiences?

Keep Climbing: Onward and Upward
All the best,

Mary

Day 23 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC

Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

10-10-10 at 10PM

Playing in the leaves for the first time

Last year on 09-09-09 it was my 60th birthday.

In the picture above, you see Baby Isabella playing in the leaves for the first time–another miracle from last year. There is nothing more magical than watching her learn and explore new things. She swings and colors and plays on the piano…and, drops to the floor when she doesn’t want to do something (hey, that’s part of growing up too). Today I saw her knock on the door and I swear I heard her say, “Who’s There?”

But my absolute favorite moment with Isabella is when I walk into the room and she squeals and runs into my arms. It just doesn’t get any better than that.

Today on 10-10-10 I’m wishing you all a year filled with blessings.

I am so thankful to each of you for helping me launch this blog–It is now three months old and at this time last year was just a dream.

For this coming year, I wish each of you a loved one who squeals and runs into your arms.

Let’s see what wonders there will be by 11-11-11 next year?

Comments: Time to Brag, Dream and Put it in writing:

What are your dreams and goals to be completed by 11-11-11? What have you completed since 09-09-09?
Share a little about yourself and maybe we can help each other reach those dreams.

Day 18 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)