Favorite disability related books - part 1

There are a lot of books out there outlining disability history. I haven't read them all, but I have read one that has always stuck with me. No Pity was the first book on disability history that I ever read. It was part of my Independent Livng class in college. I am so thankful this book was part of it because it opened me to a larger movement that I have never been aware of. It made me aware of the ones that had gone before me to bring about the ADA and IDEA. It also made me think about where things were going, and were I am a part of it.

The book explains the orgins of the movement from Ed Roberts days at UC Berkley up until the passage of the ADA. In his easy to read style, John Shapiro explains what happened without coming off too biased on the side of the rights movement. I liked that he took a lot of perspectives in the movement - those with physical disabilities, the Deaf, learning disabilities, and many others. I gave my only copy away to my successor as President of Advocates for Disability Awarenss, and I miss it. Hopefully they read it and passed it on themselves. I would really like to reconnect with this book. No Pity will always be the first book to open my eyes to the larger disability rights movement that I took for granted.

Thank you to our veterans

Since this day is Veterans Day, I want to send out my thanks to all of our veterans and current military. The sacrifice you have made for our country can never be repaid. Regardless of the situation, you answered our nation’s call for service with courage, honor, and bravery. I will always be thankful for what you did for us. Thank you for being there when we needed you.

Disability Social Networking Site is Created

Every person with a disability has experienced having a person ask if we know of someone with a similar disability. Sometimes it feels like people assume we all get together and hang out. Like there is an annual disabled convention or something.



As ridiculous as the ideas sounds, a part of me wishes there was such a connectedness between us. Realistically, people with disabilities have a lots of have a lot of barriers to getting together, socializing and such. There's the lack of transportation. Communication The internet is one way that we can connect, share experiences, get advice, give support and be supported in our lives. The folks at Disaboom are trying to take these ideas.

Disaboom is a place were people with disabilities can share their thoughts through blogs, gather and share experiences in discussions, and read articles about living life with a disability. Some different things about this social networking site is that there is a place were members can post reviews of the accessibility of buisnesses, restarants, tourist attractions and the like. They also have a Career Center that is under some development, and can potentially have resumes posted, on-line interviews, and other great features.

Its a great site, and clearly a work in progress. It only started this past summer, so there is a lot of growth and developing going on. But the potential is so great, I'm glad to be a community member myself. Check it out, its worth your time!

Autism Epidemic??

As a new parent, the statistics on autism are startling. I've sure you've seen the commercials of a mother strapping her kid into his car seat stating the chances of a child being in a wreck are 1 in 150,00 and having autism is 1 in 150. It makes me more aware as a parent of my child's behavior, looking out for tendencies in a 9 month old. I guess the ads’ mission is accomplished.

Maybe they did it too well.

The facts are clear as to the increasing numbers of children being diagnosed with autism. The rise is happening for a lot of reasons. One, the autism label is no longer the stereotypical "bangs head into walls" or "unable to relate to social situations”. Its a broad umbrella of labels. Another factor influencing the rise is that parents have found autism label provides children and adults with different services, and in some ways is more socially acceptable than other less "flattering" diagnoses like ADD. Some even say the heightened awareness makes parents and professionals interpret behaviors that are just temporary and part of that age as autism.

Whatever the reason, there is an increase, at the very least in awareness. What really gets under my skin is calling autism an epidemic. That’s a scary word to use. It brings to mind death, tragedy, and suffering. Something to keep those that I love away from. There is no denying the numbers are rising, but this is not the message I believe should be sent out.

I've always felt that disability is a function of our environment. And when our environment, our society, is looking to find a problem, it usually will. Some evidence suggests that this as been some of the case with the rise of autism. Rather than scaring ourselves or focusing on the negatives, we need to inform the public of the needs of people with autism. In my mind, that will change the environment in which people with autism live in and minimizes the effects of the condition. Statistics get our attention, but learning how we can make life better for others changes people’s hearts. The actions we take in fear to protect ourselves keep us from recognizing the solutions we can be a part of. Most folks see the stats, thank God their children are "normal" and go on with life, leaving parents, friends, and professionals and the person with autism responsible. If we don't reach to peoples hearts, show them how they can be involved in the solution, our environment will stay the same, and autism will always remain a disability.

Disability hero recognized in movie

Heroes are hard to find these days. Or so it seems. Browsing through my Google News RSS for disability news, I found this story. Its one I've heard before, and it angers and inspires me each time I do.

An ordinary need for pancakes changed the life of Richard Pimentel. A Vietnam vet who was deaf from a bomb blast, Pimentel was out with his friend Arthur Honneymann, who has cerebral palsy at a diner when the waitress they leave. She said the sight of Honeymann was disturbing customers, citing "ugly laws" that allowed businesses to do this. They were eventually arrested, and this set Pimentel on his journey as an advocate for people with disabilities.

I won't go any further, the NY Post does a good job with the story. But I am excited to read that a movie has been made about that friendship, The Music Within". Its out to limited release, and I can't wait to at least see it on DVD.

http://www.nypost.com/seven/10292007/jobs/the_warrior.htm

Christopher Reeve: A true Superman

As the move Superman Returns opened in theatres this week, I can’t help but think of the original Superman on the big screen, Christopher Reeve. Before his accident, many would have looked at him and thought him a hero but I think after his accident he was a hero as well.

For people who have lived with their disabilities all their lives, like myself, Reeve’s book Still Me should be required reading because it’s hard for us to understand the perspective of many who acquire a disability. Prior to his accident, Reeve was an active person enjoying hockey, sailing, flying, and horseback riding. From his book I got the sense that literally being Superman made the adjustment to life with his paralysis more difficult. Heck, he was an icon of perfection to most people and suddenly his body was anything but perfect.

Behind every great hero, I think there are other heroes. For Reeve, it was his wife Dana. In his book, he expressed how important her love for him no matter his limitations made him feel stronger and more willing to keep fighting. I found Reeve’s determination to get off the respirator inspiring and an example of what rehab folks like to call “self determination”.

Some in the disability community were, myself included, upset on his focus on a cure using stem cells. But in his book I came to a greater understanding of his perspective, mainly that it could potentially provide a better quality of life. For example, using stem cells to re-grow just a few centimeters or inches means the difference between using a respirator and breathing on your own. I am NOT saying people with disabilities need to be cured, but if there is something to improve your health why try to stop its development?

It took some time, but Reeve didn’t hide from the limelight. He used his icon status to challenge society to make some changes and improve the quality of life for people with disabilities. I think he is a hero for stepping out and not being ashamed. Maybe he didn’t make everyone happy in the disability community, but he stood up for what he believed. And I think that makes a difference in society, seeing someone with a disability fight and not stand down.

No matter whom they cast now as Superman, Reeve will always be the first that come to my mind. Not just as a man in a red cape, but also as someone determined to leave his mark on the world and did.

Silas: Villain or Victim?

Dan Brown’s The Da Vinci Code has received a lot of press lately. There was the trial over usage of other books. The controversy over whether the book represents theory as fact. A little known controversy is over Silas, one of the main villains in the film.

People with albinism are upset at the stereotyping of them through Silas. They feel Brown used his condition as a way to make Silas more sinister. Check out this article from the London Free Press: http://lfpress.ca/newsstand/Today/Entertainment/2006/05/17/pf-1583954.html

The flashbacks in the film don’t provide as much detail that the book does. The story behind him is that, tormented for his skin color, Silas turned to violence although he probably never wanted to. Torn by his actions, he was lead to God and the scriptures by the bishop of Opus Dei. The bishop manipulates Silas’s talent for killing to help him get to the secret of the Priory of Scion.

The question is, does the audience go away with the idea that albinism leads to corrupt moral character?

I don’t think so. I don’t believe that Silas’s albinism is really what makes him evil, so much as how the world treated him. Being treated as less than human led to his violent rage, and his intense loyalty to those who didn’t have his best interest at heart. I believe the self mutilation was an inward hatred of what he had done in his life. The lack of pigmentation isn’t what set this in motion – it was how the world he lived in treated him.

And that should be a warning to all of us, a warning that isn’t directly made in the film. Silas tragically dies running for his life and accidentally killing the bishop. The true tragedy happened much earlier when the world would not learn about who he was simply because of the lack of color on his skin.

Stigma: Society's True Mental Health Problem

I remember in college, someone in a psychology class saying that it is possible for everyone to be diagnosed with some mental illness, at least to a minor degree. Although it probably is true this doesn’t mean that we can understand the experiences of those who have depression, schizophrenia, or panic attacks. In fact, the case could be made that those with mental illness are the most stigmatized of all groups.

Mental health issues spread across every part of the world. Everyone, either personally, by a family member, friend, co-worker, is effected by it. Yet, as common place as it is, it may be the least understood. It is easy to see why a man with cerebral palsy may need a wheelchair. American Sign Language is appreciated by many as a beautiful language even by those who can’t read it. Understanding why someone is “clinically depressed” is much more abstract and complex. Its hard to understand someone who is fine physically to have problems mentally. It goes against the grain of everything that we have been taught about what is “normal”.

Stigma. It’s a nasty little word, isn’t it? A search on Wikipedia will show that the origin of the word is the Greek word for mark or spot, as in something that marked a person as one to be avoided. And I think that’s exactly how those who have been diagnosed with a mental illness feel. They are seen as crazy and out of control of themselves. Many, rather than try to seek help from psychologists or psychiatrist, try to treat themselves with alcohol or drugs. In fear of being outcast from their own families, churches, and at work, many just hide there mental illness and suffer in shame of not feeling normal. This is sad and, in some cases, dangerous way to live, which often can worsen rather than improve someone’s condition.

All of these issues are a lot to take in for those of us who haven’t personally experienced mental illness. As friends and family members of people with mental health issues, we often feel powerless. We barely understand the few medications we hear about on TV, much less what they do or how they work. We cannot “work out” someone else’s issues. We cannot be an objective third party, like a counselor is, because we love them and see them from our own perspectives already. I’ve seen many family members try to do all this and just give up, writing their loved one off as someone who is crazy and beyond help.

However, I believe we do have one very powerful thing: love and understanding. Our family members, friends, church goers, and neighbors, need to know that we care about them for who they are. What a person’s diagnosis is and understanding it isn’t so important as caring for and loving the person. And once the person truly feels loved, then they love themselves more. This love of self can lead to them going on with life with a mental illness rather than as a mental illness.

Life is about what happens in your heart

Life is not about your limbs working, your eyes seeing, ears hearing, or your brain thinking. Life is about what happens in your heart.

If there is anything I have learned from my experiences with my disability, it’s the lines above. It’s the best way to sum up everything, at least for me. Sure, my life would not be what it is if not for my abilities. But what I have gained personally from using those abilities in my experiences is what has made my life meaningful.

As I read the book, Unexpected Guests at God’s Banquet, which is about the inclusion of people with disabilities in churches, the challenge of the church is clear to me. In interacting with people with disabilities the church must purposely turn from what the outside world views as important - physical and mental ability – and to the spirit, or heart of the person. It’s a call to return to what the church is supposed to be about.

Let’s be honest. When people look at people with disabilities, they have to recognize their frailties as human beings. It’s a reality check, that although we are made in God’s image, fearfully and wonderfully made, we are not gods ourselves. We are not immortal. Our bodies can and do fail us.

Reactions are mixed when people come into contact with people with disabilities for the first time. Out of fear, some avoid people with disabilities with the belief the disability is transferable. The view that disability comes from Sin sounds outdated, but it is still out there. Others automatically assume the person with the disability is enduring great suffering as a disabled, incomplete person. From this perspective some believe people with disabilities are either super heroes who achieve despite themselves, or are in need for others to do everything for them in order to ease their suffering. The worst reaction people have to people with disabilities is just ignoring them. People will stare, realize this, and then act as if they saw no one at all. Not being granted the acknowledgement of existence, as if not human, is by far the worst.

Again, life is what happens in the heart.

It is true, people with disabilities can suffer, but not always in ways people think. The media, and movies have played the idea up the idea we suffer because of our disability. The truth is not quite that simple. True, for people with disabilities doing ordinary things is harder. Reading may be more difficult. Buildings may not be accessible. Communication may be nearly impossible. Yet, as much as accommodations make life easier, its not their limitations that they really suffer from. It’s the fear they see in a strangers eyes. Being ignored as they pass someone in the hall. Hiding their disability to friends or even family members for fear of being ignored as an outcast. Our condition is not what we suffer from as so much as to how others treat us. In my own personal experiences with my disabilities, and my interaction with other people with disabilities, what eases this type of suffering are the people that support, love, and share with them. The ones who want you to experience their lives with them.

The fact is the suffering of a person with a disability is more a matter of human interaction rather than a condition. If a person only encounters pity, fear, and is ignored, it is not surprising that they would feel as if they have no life at all because their heart would experience despair, sadness, and loneliness. Such treatment would cause the person’s identity to become their disability. When a person is loved, encouraged, accepted, they can work through their challenges, accept failures, make mistakes and feel like a whole person. A disability is a trait, and nothing more. They simply feel alive with their heart filled with joy, hope, and love. Life is what happens in the heart.

My vision is that the church ought to be the place where people with disabilities find such acceptance. Follow Jesus’s example to seek them out, and love them for what they are: part of God’s Creation. People, regardless of a disability or not, feel more alive because their heart is happy, full of joy and love. If the church wants to have people with disabilities as part of its church, it must first open its heart to them. It then must work to become a source of acceptance, and love for all. And once all its members’ hearts are filled with joy, the church itself will feel alive.

If the church ever is able to do that, then maybe it will begin to influence society rather than let society influence it.

The Keyhole is born!

With this message The Keyhole comes to life. I am very excited about what this blog could potentially. The vision for this blog is to share the personal insights of people with disabilities with the world on a variety of issues and raise understanding among the web-serfing public. My friends and I hope you enjoy our thoughts, and that they may broaden the world's understanding of life with a disability.