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Parents of Children with Disabilities Want Us to Know...

Ruth, of The Wheelie Catholic has placed a link to a short YouTube video by Javier Prato "where parents of children with disabilities talk about their concerns and also their joys."

Barriers to inclusion: Pity.

Cross-posted with permission on A Different Light.  Thank you, Ruth.

I’d like to address one of the barriers to inclusion directly. Pity.

David over at Growing up With a Disability wrote about the role of pity and how it can block inclusion. He wrote in part:

“Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.”

Pity in and of itself, as David also points out, is a negative. Period. I don’t even want to add a noun there. Because we can call pity an emotion or a feeling, but then it makes it sound as if we can’t do anything to change it. I don’t believe that. I think pity is a reaction that is learned and, in some cases, almost programmed in as a reaction to disability in our society. It’s not a helpful reaction because it creates walls.

Why? Simply put, while a person is experiencing pity, it blocks not only a dialogue, as David points out, but can become the reason for objectifying and pushing away a disabled person because being around him/her is seen as “painful” or difficult. However, what is really happening is that the reaction itself (pity) is painful and difficult - and that can be reprogrammed or reset to a different, more positive one.

Today we all hear alot of talk about the worthlessness of self pity. People extol not wasting time feeling sorry for oneself. So why do we continue to waste that energy feeling sorry for someone else - when it does no good? Feeling sorry for me because I can’t get into a non accessible bathroom, for example, does me no good. Asking me what I need is, on the other hand, helpful. The difference between these reactions sometimes is that the person sets aside his/her reaction of pity and chooses a different reaction.

When we consider what inclusion is about we need to look at the attitudes and behaviors that are blocking a dialogue toward it. Let’s put pity on the back burner and concentrate on talking about ways we can all adapt to the obstacles that remain as we work toward inclusion.

copyright 2007 Ruth Harrigan

Back to school: teaching children about disabilities

Posted with permission by Ruth Harrigan.  Thank you, Ruth.
Cross-posted on A Different Light

Aug 24th, 2007 by rampracer

As the school year approaches, I keep getting emails from my nephew. At the bottom of each email is a P.S. - I can’t wait to start middle school!

I couldn’t ask for a greater gift because my nephew, who has CP, didn’t always feel that way about school. In fact, at a young age, he’s faced inclusion issues. Fortunately he’s in a wonderful school district that attends to his needs and promotes inclusion.

One of the needs the school recognized is that children with disabilities need friends, not just helpers. This concept is basic but crucial. There is a vast difference between using the proximity of mainstreaming to create helpers or encourage friendships.

A is for Advocacy

Posted with permission by Ruth Harrigan.  Thank you, Ruth.
Cross-posted on A Different Light

Aug 25th, 2007 by rampracer 

One of the facts of living with a disability is having to make choices about when to assert your rights when you run into lack of acess. Once you make that decision, you then have to choose whether to enforce your rights under the ADA or through other means.

For years one of my friends relied on his sense of humor to handle things when a restaurant or business wasn’t accessible. I recall him charming waitresses into making room for his wheelchair and spending a half hour after his dinner explaining to managers why an accessible bathroom would help their business grow. And then he began to start filing lawsuits. Somewhere over the years he concluded that it was necessary to enforce rights, not just convince people to follow the ADA in certain instances.

Through his efforts, no matter which approach he took, a number of businesses are now accessible. Others are benefitting from ramps, accessible bathrooms and other facilities. It’s not as if someone hangs a sign on a curbcut one fights for with your name on it - but I’m sure anyone reading this who has been able to get an accessible accommodation made knows the feeling of satisfaction you get when you pass by it. I spent years quietly advocating for new curbcuts where I live. Not only were the curbcuts put in, but research was done to make sure that the safest and most up to date ones were installed as the project went on. This was all accomplished without having to resort to litigation.

It can be a tough choice as to which approach to take once you’ve decided you’re going to assert your rights. I prefer communicating with a business first before filing an ADA complaint to see if a reasonable accommodation can be worked out. Why? Because I’ve been able to negotiate much better results without litigating in many instances.

If you choose this approach, remember to set forth your side of the situation in a direct but respectful way. Try to be clear about what you’re asking for. If the situation becomes emotional, be careful to avoid becoming too reactive. After all, your goal is to get access, not aggravated. If you feel baited, simply point out that your alternative is to file an ADA complaint Knowing this can help you negotiate more effectively.

But what do you do when you run into a tough cookie who won’t negotiate with you? If any of the following occur, then you’re probably not going to be able to settle things without filing an ADA complaint:

-You receive the ‘brushoff’ - this can range from a denial that the ADA even exists to the business denying that any other customers in wheelchairs (who are deaf, blind, etc.) had any problem
- Your attempts to communicate are ignored or you receive a runaround
-You’re met with an unreasonable level of hostility (Don’t expect any business/individual to be happy about having to make accommodations; however, civility is a reasonable expectation.)

I’ve met far too many disabled people who leave it up to others to remedy lack of access. Perhaps they think they lack the skills to handle it. But often, with the right approach, simply letting a business owner know what you need results in a solution. And nothing feels more empowering than self advocacy.

Copyright 2007 Ruth Harrigan

Posted in essay | 2 Comments

2 Responses to “A is for Advocacy”

1. on 29 Aug 2007 at 3:33 pm1 misscripchick

   so true. it’s hard to believe that we still have to advocate though, especially considering that they’ve had 17 years to comply with the law.

   anyways, i wanted to drop a note about a blog campaign we’re having against the mda telethon and charity/pity model of disabilities. i hope you’re in, i think bloggers can make a big difference to find out more please check out http://crip-power.com or karasheridan.com!

   
   
2. on 03 Sep 2007 at 4:47 am2  Cheshirecat

   But you folks do have the ada actually. Here in Germany, we have to beg for - if we are listened to at all. We don`t have any rights do relie on - we are just “handicapped” ones - thats how we are called, but meant is: the crippeld. The useless. The ones who only can be pitied.

   You can`t imagine what i would give for a law similar to ADA!

Things reporters say - and write - about disability

Submitted by: Ruth Harrigan

“The snake you just saw Matt holding isn’t the one that bit him. He no longer owns that one.” via CNN broadcast

Sometimes at the end of a video clip on one of the 24 hour news station, the news announcer stops, looks at the prompter and then, with some resignation, reads inane words like this to the audience - with a straight face. Usually. Once in a while, he or she can’t pull it off and simply chuckles or points out how inane the words are.

I sometimes wonder if there are frustrated writers behind the scenes who have their fun by wording things this way and then watching the newscasters deal with it.

But the news in and of itself creates constant awkward, very human situations. No matter what the story is, there remains not only the potential and risk of getting the facts across wrong but in a biased or offensive way - or both. There’s always the message - and the meta message, as they say.

When I studied communcations at Rutgers as an undergrad, it was a new field and our studies of the media were drawn from other disciplines, like sociology and political science. Although I didn’t enter the communications field, I’m fascinated by the variables that affect our viewing as well as the dissemination of news. And, although the methods used now are much more sophisticated than when I studied the field, how much does the human factor enter into what a reporter, well, reports - or says - about a story?

What comes to mind is one reporter who stood outside a hotel during Hurricane Katrina, watching as bits of the roof - and trees - flew by where he stood, rain soaked in a poncho. Others were holding onto him at times so he wouldn’t join the debris blowing down the road. The situation seemed to create one in which his experience of the hurricane was like a resident’s. But it took one interview with a true victim who lost his home in the aftermath to realize how staged this presentation, no matter how dramatic, was.

The same is true when reporters report on issues about disability. I just read a story from wsbtv.com carried on CNN about a possible suspect in a murder who has no arms. He was referred to as the armless man about half a dozen times and I pictured the reporter pondering how to refer to him and finally settling on “the armless man”. Mentioning it once is quite different than having it not only in the headline but as the only description of the suspect. The metamessage? I suppose it may seem to some that I’m picking on the reporter until you stop and consider what the purpose was to constantly refer to him as “the armless man”, choosing a term that not only defines him as “less” but as different and, in a way, representative of his disability.

We are all the sum of our parts and none of us who are disabled are just disabled. I’m not just a quad. I’m also Irish American, a female, and Catholic. I could probably list a dozen other classes I fall into, but the point is that when reporters report only about the disability, that one dimensional view in and of itself is reminiscent of the “staring” phenomenon. Oops - armless. Wow. And it stops there. This is dehumanizing because it implies that all we are is our disability.

Like the reporter standing outside to report on a hurricane, those reporting on stories about disabled people need to be careful to remember that the lenses of their camera or the words they type are about people as well as events. They reflect social mores and their own beliefs.

And they can look as ridiculous as the newscaster telling us that the snake the man is holding is not the one who bit him.

Cross-posted on A Different Light
Copyright 2007 Ruth Harrigan

Our journey together: Disability Blog Carnival celebrates one year

Written by Ruth Harrigan, this very thoughtful post is Cross-posted on WHEELIE CATHOLIC.  [with]tv thanks you, Ruth, for sharing your thoughts with us. This post makes me want to send you a hug. ~ CK

Milestones is the theme of the one year anniversary edition of the Disability Blog Carnival. I started thinking about various milestones I've passed in my life and then realized that, for me, the more appropriate meaning of milestones has to do with their use on roads for travelers, to mark where one's journey has gone.

Those of us who either live with a disability, have a loved one who does or have chosen to travel this journey as an ally have all laid down our own markers and we recognize markers when we see them. There is a fellowship that cannot be denied among our community. The Disability Blog Carnival, created with such love by Penny Richards over at DisStudies, Temple U, has brought many together and made it so much easier for us to leave markers and find each others' markers.

As a result, we can share our experiences, good and bad, as well as information, resources and opinions. Far too many of us have been exploited for others, whether we're the unwitting subject of an article about us in which we have no say about the content or been put in a situation where we have been told how to act, what to say or even what to believe. Sometimes we've even been used as entertainment for others. It is a very different experience for us to express our realities freely.

Carnivals are full of wonder for kids of all ages and the Disability Blog Carnival is too. Click on any single one and you'll find a world opening up to you that introduces you to people who you'll never forget and wish you could meet. You'll laugh, cry and sometimes even want to send a hug when you read what others have posted. And you always know, as you read their words, that others are just as willing to read yours.

Empowering vehicle, this carnival? You bet. It's not really kid's stuff after all. But that doesn't mean we'll ever lose the wonder of finding or leaving markers for, with and by each other. And I promise one thing: this journey upon which we travel, no matter where it may lead any one of us, never ever has to leave us alone again.

Just keep on reading - you'll find a marker soon.

The Grace of Living with a Disability

Written by: Ruth Harrigan

Cross-posted on WHEELIE CATHOLIC

I see the grace in my disabled friends every day. I'm not talking about them being inspirational, because this is different. I'm talking about living with grace and about God giving us grace. Both are true.

I'm firmly convinced that the reason many people who shy away from disabled people do so is because they see a deficit, not the grace. Because they're unfamiliar with how it is to live with a disability, they focus on what they perceive the disabled person can not do. Often their assumptions about this are wrong.

Many disabled people do things in a different way. We may not walk but we roll, for example. The point is that we still get around and are mobile. So what can at first glance look like an inability to do something may be a matter of realizing that there is an ability to do it differently. Unless people get to know disabled people, they don't learn this. No words I say can convey to anyone who hasn't been around a disabled person that our experience of living is as full and vital as theirs.

This is why I believe the word inspirational is overused. Living with grace, to me, is not about being inspirational. It's about embracing who you are and participating in the world and serving others. It's an inside job, not a press release. The part where spiritual grace comes in is that I believe God gives those of us with disabilities the grace to find our way in this process. God grants us his "unmerited favor". He guides us and leads us on our spiritual journey, as he does for everyone. God may be inspirational, but I'm not.

Sometimes our journeys are not easy, but that's not any different than for any other human being. Our journeys at times may be more difficult because of how society and others perceive our disability. There are other times when it's not an easy journey because of how we feel about the disabiilty and the issues it may present.

But when people look at disabled people and say "There but for the grace of God go I", they miss a very important point. Those of us with disabilities are not to be pitied. Disabled people live full and vital lives.

And we also live with and in grace.

A Very Public SCI

Submitted by Ruth Harrigan

NFL football player Kevin Everett sustained a cervical spinal cord injury (SCI) in a game. Apparently he collided with another player while his head was in a lowered position, fell to the ground and was unable to move afterwards. He was transported to a hospital for surgery and remains on a respirator. Doctors call his injury "catastrophic" and are not sure that he'll walk again.

This kind of spinal cord injury may happen infrequently in the NFL, but it happens all the time to others - including young people like Kevin who are injured in car accidents, diving accidents, cycling accidents, gymnasts, etc. Spinal cord rehab hospitals in our country and around the world treat many in his age range who are dealing with the aftereffects of such an injury. As a person with quadriplegia, I've met many people who sustained a SCI while playing sports. So Kevin's story is not unusual.

My hope is that it will help educate people about not only what is required for someone to receive the proper care after such an injury, but the ongoing needs involved for medical equipment and services. I'd like to see coverage of not only his injury and its immediate aftermath, but what it takes to get him "the best care" as one NFL player said. Such a statement highlights the obvious - that after such an injury, families and loved ones, within their resources, struggle to provide the best chances for recovery to someone with a SCI. And then, afterwards, there is the need for accessible housing, equipment and ongoing care.

These are the real stories - the ones about living every day, not just the dramatic impact on the field and the diagnosis. It's the living with a disability that requires the headlines - and rarely gets them.

If nothing else, perhaps stories such as this can serve as a reminder that all of us are vulnerable to joining the ranks of the disabled - and that all of us deserve the best in services, care and other resources.

And my prayers and best wishes go out to Kevin and his family and loved ones, as well as all those who are dealing with the same issues in their lives.

Cross-posted on Wheelie Catholic

The Naysayers

Written by: Ruth Harrigan 

We all know them. People who tend to be negative, who have difficulty thinking outside of the box, who go around, consciously or unconsciously, squelching dreams, ideas and visions.

I call them the Naysayers.

I’ve encountered a few of them in my own life and many more in the lives of the people for whom I advocate. Many of the phone calls I get are peppered with accounts of the effecct of Naysayers in the lives of pwd. From the kid with cerebral palsy trying to get his own apartment to the twenty something blind woman highly degreed and encountering employment discrimination, their stories are the same. Naysayers try to squelch their goals.

I tell them one simple thing: don’t let them. Don’t even listen to the list of reasons why you can’t do things. Keep being resourceful and creative. For every Naysayer, you will meet someone who supports your goals.

I can promise you that - even if sometimes that person has to be the one you look at in the mirror.

Here’s how to spot a Naysayer. Unlike someone who is an Ally and is trying to present sound suggestions or a balanced view of things (i.e. a reality check), their remarks tend to be one sided and close off all opportunities. They say things like:

“You can’t do that!” (a variant: “You shouldn’t do that!)
“Do you think you’re going to be the first (quad or fill in the blank) to pull that off?”
“You need to understand that not being able to (fill in the blank) is part of being disabled.”
“You’d be easier to be around if you would just accept that this is what is like living with a disability.”
“It’s selfish of you to want to do (fill in the blank) since it creates work for everyone else.”
“It would be so much easier if you would give up on (fill in the blank). Can’t you see that?”
“I hope after this last disapointment you see that you’re never going to be able to (fill in the blank).”

And so on.

Spotting Naysayers and dealing with them, whether they are teachers, employers, doctors, nurses, colleagues, family members, friends or others, is a great step toward removing barriers that will keep you from achieving what you want. Once you can see the difference between someone who is an ally and someone who is a naysayer, your support system will grow and nourish you no matter what your personal goals are.

Copyright 2007 Ruth Harrigan

Cross-posted on A Different Light

Thank you, Ruth Harrigan

...for this endorsement of [with]tv!