California woman protests home where developmentally disabled women live by posting dozens of accusatory signs - since 2004

"Along her street, Waltz has posted dozens of signs -- written in red -- saying such things as "get out!", "your wife and kids are potential rape victims" and "sexual inappropriate fire-setter facility" with an arrow pointing toward the group home where a handful of women with developmental disabilities live.

Officials say that none of the women are sexual offenders and present no danger to their community.

Now, California's Department of Fair Employment and Housing, at the recommendation of the U.S. Department of Housing and Urban Development, is investigating whether Waltz' ongoing protest violates federal fair housing laws that prohibit discrimination based on disability."

This has been going on since 2004.

Via Inclusion News Daily

Don't get too tired to pray: Fr. Henri Nouwen & his writings

I wish I had, but I never got to meet him. Fr. Nouwen was a Catholic priest, a prolific writer, a Yale and Harvard professor who spent the last years of his life living in a community with the cognitively disabled as pastor - and aide - to many as he shared in their community. He also spent months in a Trappist monastery, traveled to third world countries and wrote. And wrote.

In fact, Fr. Nouwen wrote over 40 books, 39 of which are still in circulation. I've read a number of his books and am now reading two that I've never read before - one called The Genesee Diary from his time in a Trappist Monastery and the other called Seeds of Hope which is a collection of excerpts from his other works.

When I was at a book fair at my parish last month, I was looking at a few of Nouwen's books that were on display and had a wonderful conversation with someone who had not yet discovered his writings. After talking to me the person bought four of his books!

Although I certainly find his writings helpful to me because he does write about living with disabled people and shares many insights from those experiences of community, what I hold most dear is his ability to write openly about his own spiritual and very human struggles and defects. He thinks of writing as a ministry, one in which he is able to openly share about his journey to become more Christ-like in his daily life.

So during his time in the monastery, he speaks, for example, of how after he announced to all of his friends that he was going away for a time to live as a monk, he began to write people he knew letters and then was upset when his mailbox was empty! Eventually he realized that perhaps they were honoring his choice to have solitude - and questioned his own motives for wanting and needing their attention when he should be about the business of prayer and closer union with God. He concludes that it is his attachment to a need for unconditional love which causes him this emotional and spiritual pain and writes of his efforts to transform his life into one that looks quite different over the months he stays in the monastery.

But one phrase out of his book really struck me. He was told by someone at the monastery to try to find balance between work, prayer and rest by stopping work whenever he found himself becoming too tired to pray. I really loved that phrase because I pay absolutely no attention to anyone telling me "not to get too tired". But I can certainly tell myself not to get too tired to pray - and know that would indeed be God's will.

"On Being Independent"

Over at Whose Planet Is It Anyway, there's a great post about how the concept of independence is used with disability in (my words inserted) a "dis-abling" way. The author points out how everyone (including the able bodied) go through various changes in their lives which may be considered as demonstrating dependency or independence. She writes that so many cultural variables go into that assessment that have little to do with ability - that applying the concept to those with disabilities - has nothing to do with a disability.

She writes:

"Now let's suppose our economy went into a deep recession and I lost my job and had to move in with my parents. All of a sudden, I would be transformed into a dependent autistic adult and therefore an object of pity, even though none of my skills would have changed in the slightest. I might choose to spend my days improving society by tutoring illiterates or serving meals at a homeless shelter, but as long as I wasn't being paid for it, I would still be seen as a dependent person who did not contribute to society.

If I had the good fortune to buy a winning multi-million dollar lottery ticket while living with my parents, however, I would bounce right back into the category of socially valued independent people, despite the fact that I was not working. "

and ends by saying

"If you're thinking that all of this is totally random and weird and has nothing whatsoever to do with autism—that's the whole point."

Makes a lot of sense to me. And now for a label - independent living. You see what she's saying? Hmmmm

Advocacy, Anger and - Humility?

Without humility, there is no way of conquering anger.
– St. John Climacus

I learned years ago that anger, although it can be a useful emotion at times, fuels a great deal of negativity if I don't know how to let go of it. Because I do work that involves negotiating with people and dealing with conflict, I had to learn how to handle anger both in a work setting and also in my "off time".

Seeing injustices toward vulnerable people is a difficult way to spend one's time. I can't say that I get "used to it" when dealing with situations where someone is mistreating a person I am trying to advocate for. However there are times when the story I am told does not match the true facts and the other party is not in the wrong. The reality is that I constantly need to reassess my own position on things and not allow myself to be ruled by my feelings. This can be a tall order sometimes.

I developed a trick that works well whenever I feel angry and find it lingering. I go to God, pray for guidance to do what is best and to let go of anger that may block me from working out the best solution. The humility is both in admitting that I am in danger of losing my perspective at the times when my anger is my dominant reaction and that I am open to solutions other than those I may have considered.

I would never want to completely lose a sense of feeling anger when I see injustices. It's a valuable signal to any of us at times. It helps us protect ourselves - and others. But we all have experienced losing our temper and handling a situation badly. That reaction doesn't help any one - and can often cause more harm.

As an advocate I know there is an emotional cost to the work I do. It is one I am willing to pay - but not willing to inflict on others. So I also pray to let go of anger that may seep into my personal relationships in my "off" hours. Some days I fail at this and find myself apologizing to someone. But this has happened much less often since I turned to God for help. There is no switch in us to turn on and off the feelings that arise from doing advocacy work. Asking for help and support with this from God as well as a few trusted friends is both useful and wise.

Getting to know you, getting to know all about you...

With the onset of my own impairment, I became almost morbidly sensitive to the social position and treatment of the disabled, and I began to notice nuances of behavior that would have gone over my head in times past. One of my earliest observations was that social relationships between the disabled and the able-bodied are tense, awkward, and problematic.
-Robert Murphy

One of my earliest ventures out in my wheelchair after my accident was to a local mall. After shopping a while I was waiting for my friend to come out of a store when a 50ish looking woman approached me. She began a conversation with me that seemed innocuous but quickly escalated to an inappropriate and intimate one - considering we had met seconds before.

After telling me she just had several surgeries, including a hysterectomy and another procedure I cannot recall, she flat out asked me if my bladder worked. I remember blinking at her and not responding. She smiled and repeated the question, adding "Surely you don't mind. I'm sure with your disability that you're used to talking about these things."

Not with total strangers, I remember thinking, as my friend walked up. I never did answer her question and, quite frankly, if it happened today, I have a repertoire of ways to respond because over the decade I've been visibly disabled that same kind of behavior has repeatedly happened .

I'd label it inappropriate and intrusive, but I suppose it might fall into the category of tense, awkward and problematic. Certainly some would say that when people ask intrusive questions, they "don't know what else to talk about" to which I respond "How about those Mets?"

The same social rules do apply in social interactions with people with disabilities. It's inappropriate to walk up to a total stranger and ask her questions about her bladder and it's the same when a person has a disability. Yet it's amazing how many people seem to think that getting to know a person with a disability is only about asking questions about the disability- which include intimate and intrusive questions sometimes. Rather than talk about topics of general conversation such as movies, books, sports, etc, some people make a beeline for the medical information.

I'm not saying, on the other hand, that it's not okay to ask at all what a person's disability is at some point. And sometimes when people hold back asking that question it's almost painful to watch them dampen down their curiosity. I have had a few conversations where folks were talking about other topics but kept trying to find out exactly why I was in a wheelchair - like one woman who kept bringing up TV movies about disabled people in wheelchairs and then asking me pointedly if I could relate to each character. I felt like screaming "It's a spinal cord injury!" after five minutes of that.

If there's one way to reduce the tension and awkwardness that people sometimes feel upon meeting a person with a disability, it's this - social encounters with people with disabilities need to acknowledge the person who has the disability. Just like you would with anyone. And getting to know that person takes time just as it does with everyone else.

"Dogs in the Fog"

Over at Adoro te Devote, a beautiful spiritual post about walking in the fog -

"Sometimes we all have to walk through this kind of fog. Sometimes we can't see the next step before us, even if we have traveled this path a thousand times before. It is one thing in broad daylight; it is entirely another when we are surrounded by darkness and confounded by the fog. We cannot see any obstacles, although common sense tells us they are there. We cannot see a thing, yet we are being pulled in all directions while trying only to stay on course.

The spiritual life is like this, but it is in the darkness that God can speak most clearly. The hinderances are removed from our perceptions, our senses are cleared, and we cannot help but strive for understanding in lieu of what we no longer have at our disposal. "


-and finding hope in a new perspective...

Update on IBM web video accessibility for blind

A while back I posted about new software coming out by IBM to assist visually impaired computer users in dealing with video on the web. Today new information was released indicating that this may be freely available. Moreover, the software was designed by a visually impaired person and will allow a user to use shortcuts to stop/start video on web pages, among other things.

According to the article,

"The A-Browser will give blind and partially-sighted people the same control over multimedia content that sighted people have using a mouse.

IBM says it will be available later this year and hopes it will be free.

The A-Browser is the creation of Dr Chieko Asakawa, a blind employee at IBM'

Via BBC News

Height differential phenomenon- HDP

Just read a great article over at BBC Ouch by Victoria Brignell describing what happens to a wheelchair user socializing at a party where folks are standing around talking. She calls it height differential phenomenon: the fact that people in wheelchairs are sitting at the same height as everyone else's - well - butts. She writes:

"Holding a conversation at such events poses a major challenge for the average wheelchair user. How do you chat with another guest when your head is a considerable distance beneath theirs? The answer is: with difficulty. They can't hear what I say and I can't hear what they say - not a great basis for communication. "

As the author concedes, this kind of difficulty is never going to merit consideration like issues such as accessibility; however, in its own way, it can really stifle social contact and keep one out of the conversation, particularly in a room where multiple conversations are ongoing and you cannot hear what is being said. Moreover, I can relate when she says she's learned to put a certain look on her face and nod as if she can hear sometimes.

Victoria also writes about the experience of getting around on transportation and going to shows in a wheelchair - and some of the humorous and not so humorous aspects of that. Definitely worth a read - as are some of the comments.

The Gimp Parade: Accessibility here, just somewhere else

Kay has posted Signs that show non-accessible accessibility - an all too familiar sight

Wheel of Steel

Lions and tigers and bears. Oh my.

Picture this:

"At the beginning of the act two daredevils, Bello Nock and Nikolas Wallenda, balance catlike on a scary 39-foot structure that resembles an enormous bubble-blower — a stick with a hollow circle at each end, or if you will, two giant hamster wheels revolving on a central axle. This is the death wheel known to circus audiences for decades.

Suddenly a barrage of fireworks signals a surprise: The two seemingly solid wheels split apart like a Tinkertoy. The hamster wheels have doubled to four, and Mr. Nock and Mr. Wallenda begin whirling in opposite directions without safety nets or wires." Via NY Times

Tonight at Ringling Brothers Circus, Wallenda and Nock will unveil a contraption sometimes called The Wheel of Death - but properly referred to as the Wheel of Steel. NY Times has a multimedia presentation of how this device works.

For my friends interested in all kinds of wheels, engineering and mechanical devices, check this out. It's quite interesting. And to read what a lucky reporter who got to try it out and calls it a "wheely big circus roll", click here. To read about what the performers have to say , click here.

Chocolate Jesus exhibit cancelled

Foxnews reports that the exhibition of a chocolate Jesus has been cancelled after protests by Catholics. The artist, who planned the exhibit next week during Holy Week, indicated that participants would be invited to "lick" and "eat" parts of the exhibit.

Why Our Perspective and Presence As People with Disabilities Matters

Iris Young (1990) delineates five components of oppression and one is:


Establishment of the dominant group's experience and culture as the norm, which renders invisible the oppressed groups' perspective


Has someone ever tried to silence you as a person with a disability when you offer your perspective on a situation? Has someone told you that your perspective doesn't "fit into" the reality of a situation or is just plain wrong?

Unfortunately, because of the oppressive history that people with disabilities have, many times when we speak up, others find what we say to be so outside the "norm" that they dismiss it. This can lead to labeling us as malcontents or, even worse, having our reality denied to our faces.

"That can't be right," a person might say to you. "That can't have happened to you. ____ (fill in the blank) doesn't treat people like that!"
or
"You're just upset and overreacting. You're not seeing this from everyone else's point of view."

The truth is, people with disabilities are not seeing things from everyone else's point of view. We have our own perspective. It varies from individual to individual depending on other factors such as our gender, race, education and poverty level. Our experiences may be outside of the norm but that doesn't mean that we as people are. We watch the same TV shows, read the same papers, live in the same society as others and adopt many of the same attitudes and rules. But we also carry with us the experience of living with a disability, one that brings a perspective of its own.

So what does this have to do with inclusion? Everything. We need to be realistic about the gap that exists between what able bodied people know and do not know about the experience of living with a disability. It seems paradoxical to urge people to look at differences in experiences, but inclusion is not about people with disabilities just fitting into the "norm". It's about allowing those of us with disabilities to fully be ourselves and enrich the faith community and community at large by making ourselves a visible presence.

Let me use an example here. My neighbor on the left has a son who is an amputee. Because she has a child with a disability, she has some experiences with some of the issues I face as a person with a disability. My neighbor on the right has no one in their family who has a disability. Although they are very nice people, having me live next door has been more of an adjustment for them. They aren't familiar with what living with a disability is like and, at times, misunderstand things. One night I overheard them talking to my neighbor on the left, asking her why I could not take my own garbage cans in "on time". I could hear the "a-ha!" in their voices once they understood more about my disability and realized I depended on outside help to do that. Since then they no longer get angry at me when the cans are out an extra day. It was a matter of seeing things from a certain perspective, one which was unknown to them. This is a small example of how people can mistakenly attribute the wrong motive to outward behavior because they do not understand our perspective - or how we live with a disability.

Just think of how many more behaviors this happens with- especially in a large group of people!

Unless we are willing to recognize that the perspective of people with disabilities has to become visible, we cannot reach inclusion. It is good to remind ourselves that we have much in common with the rest of society, but it is necessary to acknowledge that we have different needs, experiences and spiritual journeys in order to have a fully inclusive faith community.

No More Sunsets: The Last Days of a Meth Addict

Shawn Bridges was a meth addict who knew he was dying. He wanted to document the last days of his life in hopes of stopping others from going down the same path. Shawn passed away earlier this week and I'm posting this so people will see it - as he wanted them to, to raise awareness.

And in yet another loss of life - here's the story of a college freshman who just died from binge drinking.

Gimme a high five!

{Visual description: A number of lacrosse sticks are held up in the air tapping each other.}

This afternoon the high school lacrosse team paid me a visit. Well not really.

Apparently their cross training routine now includes running through the neighborhood and using their sticks to knock over garbage cans.

So I'm sitting here and suddenly I heard a few loud thuds outside. Being the curious quad that I am, I rolled to the front door only to find that my garbage cans had been knocked asunder. Oh dear. And as I looked toward the right, I could see a few stragglers from the high school lacrosse team running out of sight as they headed around the block.

I swear I saw a few of them giving each other a high five with those darn lacrosse sticks.

Now I'm no lacrosse player. There is no wheelchair lacrosse - yet. But I don't think the object of the game is to knock things over. I thought it was about getting the ball into the little net on the end of that stick they use and tossing it into a bigger goal at the end of the field.

So wanting to fulfill my civic duty to help improve the lacrosse team's playing skills, I decided to give them some real practice the next time they came around the block. I duct taped my tennis racket on, hauled out some tennis balls and as they approached a second time, shot some balls at them and nodded my head at the target - my garbage cans.

"See if you can hit that!" I said as I hit balls at each of them.

They missed. I suppose it did take them by surprise to see me out there in my wheelchair hitting tennis balls at them.But they clearly need more practice.

Catholic podcasters...

Title Varies Slightly offers a great review of Star Quest Production Network - an alliance of Catholic podcasters with great content. Click above to read her post: An Enthusiastic Plug for SQPN

Hip hop at the Lexington School for the Deaf in Queens

Students put on a hip hop musical called Breakin' Thru 2 last week . "The nine dancers, seventh and eighth graders classified as “profoundly deaf,” relied on visual cues for their timing and felt the sound from the large bass speakers under a stage floor designed to conduct sound vibrations. This worked especially well with the heavy bass beats of hip-hop music."

Via NY Times

New mobility magazine

Anyhow, I decided to subscribe to yet another disability magazine. I already get Mouth, some grassroots advocacy newsletters,and Action magazine from United Spinal. But I've heard good things about New Mobility magazine so decided to try that.

My issue came today and I'm not disappointed. The lead article is called Parenting 101 and it discusses parenting- with a disability. Then I glanced down the rest of the articles and was thrilled to see one about Simi Linton (whose blog Disability Culture Watch is in my blogroll check it out!), John Callahan (a very funny quad), an article about sports (yaay) and an article about affordable accessible homes (always looking for affordability!)



{UPDATE: John Callahan has put out a CD (I've linked to it above - just click above and you'll be taken to a site where you can listen to, buy and peruse his CD if you're interested.)

Stations of the Cross

Over at Pause for Prayer, Sr. Janet is writing posts on the Stations of the Cross which I thought my homebound Catholic friends might enjoy. Click above for a link to the first one. She is already up to the 6th Station of the Cross.

I found this blog through stblogs where I have my abridged blog of Wheelie Catholic. While you're over there, check out a few more blogs!

Online wing - Museum of Disability History

The museum in Williamsport NY offers some online offerings about disability history, including some very interesting visual reproductions of ableist materials. This includes magazine covers, posters and artwork. It's worth a visit.

By the way, there is a particularly interesting timeline section in the media area.

Via lifekludger: my ear buds have fallen and I can't get them back in....

...I have this problem as a quadriplegic. Ear buds fall out - paralyzed fingers - no one around to help ..I particularly hate this when I'm trying to listen to an audio book.. Dave over at lifekludger found this sports headband to solve the problem - check it out...

More than 50 ways to make your parish accessible at little or no cost...

Here's a great list of ways to create accessibility - at little or no cost. There are ideas such as creating a disability section in your parish library, having outside speakers come in, purchasing large print materials - click above to check it out.

Just another cheerleader...in a wheelchair....

Listen to Lindsey Cioffi talk about the first game she cheered at for her school in Bridgeport Connecticut:

"I didn't sleep the night before I was so excited," said 15 year od Lindsey. "I got the uniform and it fit OK. It was cold and wet at the game, and I was nervous. The nervousness went away about the middle of the first half. We led cheers and got in the Friendship Ring. The other cheerleaders were so nice."

And so it began. After weeks of practicing with the rest of the cheerleading squad, Lindsey got over her nervousness and is now an old hand at cheerleading.

Her mother approached her high school principal to talk about starting a cheerleading squad for students in wheelchairs and was told there was no reason, since the school had a policy of being inclusive, that Lindsey couldn't try out for the regular cheerleading squad. So she showed up as one of 30 people trying out for about 20 spots - and made it. She did admit she was nervous when she saw people doing flips.

To read more about her experiences and see pictures of Lindsey, click above.

Community Boating Inc.

Do you live near Boston? Would you like to try accessible sailing or windsurfing?

I have exciting news - the Community Boating Inc. is opening early - on Saturday March 31st at 9am the doors will open for the adult program. You do need to go to their website and fill out an application form - there are dues and also some scholarships available at times.

I had dinner with my friend Jay last week and he told me all about this exciting program. Hopefully I will be able to travel up there to be a guest sometime.

Episode 35 Perils for Pedestrians: Diagonal curbcuts

I want to thank John Wetmore of www.pedestrians.org who stopped by to leave a message about this episode of the show that deals with diagonal curbcuts. I'm getting emails from readers who wanted this posted - so here you go!

School for deaf and blind allows felons to work on campus

This article indicates that, although notified of the situation about 9 months ago, the e Florida School for the Deaf and the Blind allowed felons to work on campus construction jobs during the past two years.

Via CNN

Reasonable accommodations for tenants with disabilities

DisStudies Temple U posts useful information for people with disabilities who receive a monthly check and have difficulty paying their rent on the 1st of the month. Click above to read about a case where a tenant received a reasonable accommodation to make paying his rent easier. Sometimes we need to get others to think outside the box to define the accommodation we need.

Can you walk?

{Visual description: Person in wheelchair faces bottom of steep flight of steps.}

I've been in this position a number of times in my life when I've gone out to go to do things. I arrive only to find that the place of business or other location has no ramp available.

I can't tell you how many times it goes this way: another customer or a friend goes inside to ask if they have another way to get inside and then the owner comes outside and asks "Can you walk?"

I reply "No."

And a surprising number of times, there is a second question: "Can't you walk at all?"

At this point, I change the subject back to the original issue with the business owner: why isn't there any access? In my early years as a wheelchair user, I would get sidetracked into this discussion of how "I" might be able to crawl, fly or otherwise haul my paralyzed body inside , what my particular disability is, etc. but now I cut that conversation off.

Because it's what they call in the law a "red herring". It's a way to distract the person with a disability from the issue at hand- that there is no access. We wouldn't need a ramp if we could walk, but that's the point of the American with Disabilities Act - it's in place to protect our rights because we have disabilities and cannot walk.

Questions like this, conscious or unconsciously, shift the burden back to us. I have friends in wheelchairs who reply simply "If I could walk, I wouldn't still be down here" or just laugh. I choose to say "No" once. Firmly. And if the subject is pursued, get back to the matter at hand.

Access. For those of us in wheelchairs.

Our job is not to make up anybody's mind, but to open minds and to make the agony of the decision-making so intense you can escape only by thinking. ~Author Unknown

Thinking blogger awards

I'd like to thank Dream Mom who recently nominated me for the Thinking blogger award. I appreciate the nomination from her especially as I always find her blog makes me think as she writes about her life raising her son who has a disability. For example,she writes "And what should I do with all of these things? If I throw them away and he dies, I have nothing. If I keep a few of them, will I wish I had saved more? I have fewer things to save, since he can’t do as much. So that makes what he does have and what he used to do, all that much more important. What do you do when they don’t make memories anymore? You look in the memory box. You open it up and remember the good times. I am certain when the time comes, I am going to need all of these things. And I bet I’ll be glad that I kept them." If that doesn't make you stop and think, I don't know what will.


As is customary, I'd like to say that the awards started here.

And instead of thanking everyone I know - because then the music will start playing and they will put a commercial on ---

I'll just go ahead and nominate five blogs that make me think, as is also customary. Drum roll please!

They are:

1. Monastic Musings. It is no secret that I am a daily reader of Sr. Edith's blog. I love not only her sociological perspectives, but more importantly, her spiritual insights. Sr. Edith was reviewed in a local paper as the blogging nun and her sense of humor is wonderful. She blogs in addition to her job teaching at a university (no small feat these days), traveling, researching, writing, etc. No wonder she always has something to say that interests me and makes me think!

2. Planet of the Blind. This is another daily read for me. I enjoy Steve's poetry and literary reviews as well as his insights into disability issues and happenings. I also love Connie's posts about interesting people, links and stories. They both tell great stories that make me laugh and ....think.

3. Wheelchair Dancer. This is the blog I go to when I am looking for someone in a wheelchair to relate to on a blog. I will say I have thoroughly enjoyed learning about wheelchair dancing as an art, but most of the time I seek food for thought about living - really living - on wheels.

4. Rolling Rains Report. Scott's blog is amazing. He covers topics on travel, disability and universal design - and everything in between. Moreover, he does this in different languages and on an international level. Not only does his blog make me think, sometimes it makes my head hurt - in a good way! His blog is a great resource as well.

5. ballastexistenz Last but not least - at all - is Amanda's fabulous blog which contains so many insights about her experiences as a person with autism. She is also a disability advocate for others and writes about the perception of people with disabilities by society - and vice versa. Don't miss reading this blog.

So thank you for enriching my life.

According to the rules, now that you have been nominated, you need to nominate five other bloggers who make you think, and who have not been nominated before. You need to attach a link to the original post of how it all started. You should also include the Thinking Blog Award.

What We Think We Know

"In reality, the people not seeing that someone is disabled are not seeing it in part because they expect people to be non-disabled until shown otherwise. ..To give an example of the opposite assumption, by the way, you only have to look at how I perceived people after I had been in institutions and special ed for awhile. I would walk down the street, and see all kinds of people. I would expect every single one of them to be disabled. I would expect each one to start behaving unusually or shrieking or rocking or something. I was more surprised (and alarmed) when they didn’t than when they did."

-ballastexistenz

Out of sight: How assumptions we make affect how (or if) we see disability

Over at A Different Light

When you're excluded.....sometimes it takes more than one try...

Here's a clip from the Family Guy about a character in a wheelchair who is denied service at a friend's restaurant. Over at the 19th floor, Mark has posted the episode "Crippletron" also from this show....when the disabled form forces! Ta - da!! Click above to see that episode after you watch this one.

"Identity Politics Gone Wild"

No, this isn't like Girls Gone Wild and spring break. Well - in a way it is.

The Weekly Standard has published the above article about the standoff at Gallaudet University. I read through the article, which is full of criticism of the recent events at Gallaudet University.

And I'm not saying that I agree with everything that happens at Gallaudet or with everything in deaf culture. I don't. In fact some of the points raised have validity.

But to use language like

"All that was missing from this 2006 version of those heady days of 40 years ago was Mark Rudd and his famous bullhorn. That would have been unnecessary, however, for Gallaudet is a university for the deaf"

"yet another phenomenon forged during the 1960s and belatedly recapitulated last fall at Gallaudet: the mixture of anger, self-pity, and clannish exclusiveness that is radical identity politics" and

"or maybe--as a new argument went after the "not deaf enough" argument seemed to fall on deaf ears among outsiders, so to speak, and was quickly shelved-"

reveals a use of language about disability that is disturbing. What do I mean by that?

First I find its style to be sarcastic, which never bodes well in any intelligent discussion of a topic. Worse yet, this language also pokes fun at deafness as a disability. And there seems to be an agenda here about putting the deaf - and disabled - in their place. To silence them. To tell them to sit down at their desks, study and be good little deaf kids.

The reason we have identity politics in the first place is because of the very real oppression and silencing that has gone on for people with disabilities for thousands of years. And continues. And we are just beginning to be able to say what our experience of living with a disability is like. Radical identity politics are an outgrowth of our movement to find our voice.

The author refers to members of the autistic community as well. (She references them in the same breath as the chronically obese, apparently an ADA thing although I'm not sure.) This one or two sentence allusion to the autism community would hardly warrant mention here except that she brought it up, dropped it and failed to go into any explanation as to why people with autism, who are developing a strong voice, wish there to be change in how they are perceived.

There are legitimate reasons for not wanting to be perceived as "disabled" when such negative connotations still exist that are heaped upon us by our society. Although personally I dislike it when someone in another group finds it offensive to be considered disabled, thus adding to my oppression since I am a person with a disability, I do see that reaction as an offshoot of the original oppression we have all encountered. This disability hierarchy, in which those of us with disabilities at times oppress each other, has its origins in the oppression we all face from society.

The root of the problem is that being seen as disabled is still a slight, a put down, a tragedy, a disgrace, a shame, a punishment -well you get the idea. I'm not willing to say or do anything to compromise my right- or anyone else's right - to speak up about that issue. Just as I sometimes feel that people who leave comments make my point better than I ever could when they disagree with me, I feel those who are deaf who say they are not disabled are the best proof of the degree of oppression that people with disabilities still face in our society.

Disability & Religion bibliography

Penny Richards from over at DisStudies Temple U put together this impressive bibliography that contains many resources which would be of help to people working toward inclusion of people with disabilties into their congregations. She was kind enough to send this to me months ago. I'd like to post it periodically so that folks can benefit from it.

Considering leaving your church - here's a resource for people with disabilities

Sadly, at times, people may decide to leave a church. I received a comment yesterday from a reader who is considering "moving on" to another church.

When I looked around the internet and spoke to my able bodied friends, they gave me reasons like this for leaving a church:

I can’t get along with (a person or group of people) and/or there are cliques
I don't agree with who is running the parish council (Women's/Mens Group, e.g.)
My deeply held views on a certain issue have been ignored
I don't have enough input into decisions made.
I was intentionally offended by someone.

Of course these situations can also happen to people with disabilities. On top of that, however, as my reader pointed out, people with disabilities have additional concerns that may cause us to consider leaving our church. In her case, she has no access to a building where activities are often held and, although she has asked for over three years for a ramp or another accommodation, no action has been taken. This is seriously impairing her ability to participate and causing her to consider leaving. Scott Rains from RollingRains Report offered the suggestion to contact the Religion & Disability Program of the National Organization on Disability. He noted that they have helpful resources and people over there. (Click above to get to their site). I've added them to my blogroll as well.

Whenever you are considering leaving for any reason, it would be a good idea to seek out godly counsel from someone, engage in a prayerful review of not only others' behavior but your own and use the Sacrament of Reconciliation to deal with the situation. It is important that all of us seek to be accountable on a spiritual level for our own part whenever the issue of exclusion - or the choice to leave a church - comes up. Sometimes going through this process will lead us to a solution that will benefit everyone.

Catholic Carnival 112

It's up over at the blog Profound Gratitude!

Exclusivity is a spiritual danger

I found this 2001 article in the National Catholic Reporter archives. It's written by a woman who talks about how she resents people who come into her church just on holidays, who seem to flit in and out or are new when she has settled down roots for seven years, done her share of casserole making and baking , etc.

Then she interviews a parishioner of 50 years who tells her how "she" resents newcomers and realizes that the woman is referring to people like - her! Click above to read how this changes her attitude about exclusivity.

Quad weight (cat) lifting

{visual description: Book cover reads "Catflexing: A Cat Lover's Guide to Weight Training, Aerobics and Stretching " showing photo of a standing woman holding a very large black and white cat out in front of her mid-air.}


That's right. I lift weights.

I don't have any special equipment like some of my quad friends who use this 3000 dollar device called an Uppertone to do it on. Not me.

I use my cat. The cat weighs about 23 pounds although it might be a bit less. He is pretty fluffy so he may just look heavier than he is.

But he's no lightweight. And although I haven't been able to lift much over 10 pounds in free weights (which has taken me a while to work up to ) I can lift that darn cat. I think it's because his weight is balanced better and he just doesn't slip. He lets me lift him with my elbows - kind of sits there in the crook of my arms and lets me lift him up, down, up , down.

Sometimes he sighs. I think I've seen him roll his eyes at me. Once he fell asleep while I was doing it.

But I'm not deterred. I think he's heading toward 25 pounds soon. And that will be a new personal best for both of us.

"Wristcutters: A Love Story"

Suicide prevention groups and other mental health advocates, including National Alliance for the Mentally Ill, the American Foundation for Suicide Prevention, Mental Health America and the Suicide Prevention Action Network USA are protesting against a series of ads to be used for this movie .

"The images will depict people jumping off a bridge, electrocuting and hanging themselves. The acclaimed film follows a group of people that have committed suicide (including stars Patrick Fugit and Shannyn Sossamon) as they take a road trip through purgatory.

"You don't see people making fun of other causes of death, but you see it with suicide and mental illness," Robert Gebbia, executive director of the American Foundation for Suicide Prevention (AFSP), wrote in a letter to the film's backers."

Via CNN

"Christianity and the disabled: Do we serve an inaccessible God?"

This article talks about Old Testament beliefs (in fact people with disabilities were not allowed into the temple to worship). It also states:

"Where did these exclusive attitudes come from? There are a lot of scriptures that list disability as a punishment inflicted by God to anyone who disobeys religious law; see Deut. 28: 27-29. It is written in 2 Kings 6:18 that God punished Elisha's enemy with blindness. Zach.12:4 says that horses will be blinded to punish mankind.

...Jesus, on the other hand, interacted with many disabled people. He was undoubtedly, the first disability activist! He was always in trouble with the religious in his day for healing persons with disabilities. In John 9, one of Jesus' own disciples asked him, "who sinned, this man or his parents, that he was born blind." Jesus replied, "neither," and then he healed the blind man. This angered the Pharisees. They investigated the healing and in conclusion, said to the man who was blind, "you were steeped in sin at birth. How dare you lecture us!"

And he wanted us included in the social life of the community. He said in Luke 14:12, "When you have dinner, don't invite your friends or relatives, or your rich neighbors. If you do, they will invite you to their house in return and you will be repaid. Instead invite the poor, the lame, the blind the crippled and you will be blessed and repaid at the resurrection."

... [I]f the church is inaccessible, what does this say to a disabled person about God? And I can't help but wonder; if participation in any religious requirement is inaccessible, or if participation in any church activity is inaccessible, is it from God or from man?"



Via Inclusion News Daily

Inclusion: Faith communities and autism

A grant has been awarded to the Boggs Center to write a booklet about faith communities and autism.

Slumgullion 32 over at the Gimp Parade

From Katja's accessibility travel adventures to a comedian insulting deaf people on the radio, the Slumguillion always has interesting and important information.

I too am appalled at how often able bodied comedians use people with disabilities as gist for their routines. A friend of mine who is another quadriplegic told me that he attended a live comedy show and was the butt of jokes most of the evening by the comedian du jour. Although he has a sense of humor, he felt that it was done in an excessive and demeaning manner.

And in this case doing it on the radio to people who cannot even hear them is the height of cowardice.


An excerpt of the radio show:

"Lisa Lampanelli: I was always [wondering] if God would maybe think my act was awful and make me deaf so I cant do comedy no more, ’cause that’s why people are deaf; ’cause god hates them.
Male DJ: Now, listen, Lisa.
LL: God hates deaf people, what is wrong with you?
Male DJ: There are gonna be a lot of deaf people there.
LL: Oh, I hope so.
Female DJ: Well there will be. There’s a college within RIT [Rochester Institute of Technology] that’s specifically for deaf students.
LL: Don’t you think deaf students, could be maybe just retarded, and they’re trying to sneak by saying they are deaf?
Male DJ: Lighten up a little bit."

Over at RidorLIVE.com, a deaf blogger writes:

"Don’t you understand this?! Lisa Lampanelli took this opportunity to make fun of Deaf people behind our backs without our knowledge by going on the radio station and mocked us of our dignity — all that we fought for years to preserve our dignity. It is the oldest trick between hearing and Deaf people, by making fun of us using their voices without us knowing what they had to say about us. That is what?
Audism.
It is not cool to make fun of people’s races, but it is cool to make fun of Deaf people?"

A la Michael Richards' racist tirade.

And this bit about people going around all of the time saying God hates disabled people - or we are being punished - is not cool either.

Disabled woman denied sustenance

Over at Human Life Matters, a story about a woman with developmental disabilities

Futile care law - a death sentence for people with disabilities

I am frightened.

I'm watching how few people are signing this petition for Emilio despite the fact that the Futile Care Law allows a plug to be pulled on a human being over the wishes of his parents and family. It allows a date to be set to put a person with a disability to death and then gives a 10 day time period before it is carried out. It has no safeguards like the usual death penalty for criminals. There is no guarantee to any recourse. Once sentence is pronounced, the clock ticks.

This is even a further encroachment of the rights of those who live with disabilities. This baby's mother has to sit by and can do nothing under this law to stop her own child from being put to death. It places our lives in the hands of a hospital's ethics board. It allows that ethics board to determine what is in our best interest - and we are supposed to believe that the cost factor does not weigh into that.

I don't want a hospital ethics board sentencing me to death one day. I know from living in our society, which worships those who look "perfect" just as it devalues those who are deemed imperfect, that my life is worth less in many peoples' eyes because I have a disabiliity. There is no doubt in my mind that, in the hands of an ethics board, I could one day be subject to a decision, against the wishes of my loved ones, that my life is futile.

Why should I, or any person with a disability, be subject to a death sentence when we have committed no wrong? And yet I hear no outcry, not even from those who oppose the death sentence in the criminal justice sytem. Is this a different standard because the person who is being put to death is disabled? Are we as a society willing to be that blatant in our disregard and contempt for people with disabilities?

For those who choose to remain silent on this issue or fail to step up yet espouse that they believe in the equal value of human life, I am frightened. For those who are apathetic about this tragedy, I am frightened. For those who believe that this child's life is worth less than your own, I am frightened.

We as disability advocates have stepped up and put this issue into view. We have done the work to make people aware. We have spoken up for those who cannot speak for themselves. We are telling you that Baby Emilio's life is not worth less than any other child's. His life is not "futile" to his mother who is fighting to keep him alive.

We are asking that his life be accorded the same dignity and respect that yours is or your child's is. Many who are willing to stand by and allow this, I fear , will only understand when a loved one is in the same position.

Petition against Removal of Life Support for Baby Emilio

Disability Rights advocates work to save Baby Emilio

Groups such as Not Dead Yet, ADAPT, the Feminist Response in Disability Activism, and individual advocates are working to keep doctors from pulling the plug on Baby Emilio, a toddler with disabilities in Texas who has been declared as "futile" under the Futile Care Law. Under the Futile Care Law, physicians must give only 10 days notice before they withdraw treatment if further care is deemed medically futile, even over the wishes of the patient and family. The ethics committee at the hospital, which has been given this Ultimate Authority, has deigned to allow the child's family until April 10 to find a hospital or doctor to care for him before they pull the plug.

This would be done AGAINST THE WISHES OF THE CHILD'S OWN FAMILY, who want him to be kept alive.

Meanwhile there is a bill pending in the Texas legislature which would prevent hospitals from doing this until the family has had time to find another hospital to care for the child.

I will post the petition again on my blog. We only have 300 people and organizations who have signed this.

Anyone else believe in the value of the life of a toddler with disabilities and/or the right of his parents to make the decision?


Via Inclusion News Daily

Home health care worker wage case to be heard in Supreme Court

The Supreme Court will hear a case involving the issue of overtime pay and minimum wages for home health care aides.

"[O]n April 16... the Supreme Court of the United States is scheduled to hear oral arguments in a case in which Ms. Coke, a 73-year-old immigrant from Jamaica, is the sole plaintiff.

She is challenging Labor Department regulations that say home care attendants, who number 1.4 million, are not covered by federal minimum-wage and overtime laws."

Health care agencies claim they cannot afford to make this change due to the reimbursement rates they currently receive.

Via NY Times

"Perils for Pedestrians"

is a public affairs television series that looks at problems confronting pedestrians in their communities, and solutions to those problems from across the United States, and around the world. Over at Rollingrains Report, Scott has posted a video of an interview with a blind pedestrian and a wheelchair user who discusses universal design. Definitely worth checking out.

Highlights for me included that we need to raise awareness regarding the dangers of turns on red lights to blind pedestrians who have been injured - this woman described having her cane knocked out of her hand as she was knocked to the ground on all fours when someone made a right or left on red. I also found the wheelchair interviewee to be helpful in terms of raising awareness that without transportation, people can remain "prisoners" in their homes and that their homes can become like institutions if they cannot access transportation to go out and do the things they need or want to.

Over at Historical Christian....

Aimee writes a spiritual post about people with disabilities and God's love.

She writes about Bruce, who has a cognitive disability, after he comes out of an institution to live in the community:

"Bruce spent the first half of his life in an institution, and I asked him one time what it was like. He told me stories, in his simple, innocent way, that I cannot reproduce here. He also told me that when he first came out, he was terrified, because he had never been out in the world before, and didn’t know what to do or how to act, found all the noise and activity confusing and terrifying.

But now, he found it a joy, and loved living every day. He always spoke with joy and love of his ability to live in the world, have a job, be around people, and have friends. And it showed – he was a joy to be around."

What a gift to find a post that highlights what people with disabilities can bring to the community rather than one that complains about accommodating them! Thank you Aimee.

When shopping becomes an obstacle course

Those of us who use wheelchairs for mobility are sometimes confronted by a number of obstacles that make shopping very difficult.

Perhaps you've run into some of these situations:

aisles obstructed by merchandise; display racks that are too close together; no open accessible check-out aisle and/or failure to open a sufficient number of accessible check-out aisles; designation of the only accessible check-out aisle as limited to patrons buying a limited number of items;lack of adequate handicapped parking; and unavailability of handicapped restroom facilities, ramps or curbcuts.

Any of these situations can be frustrating but did you realize that they also constitute violations under the ADA?

Today I was at a local mall and found it impossible to navigate around several departments of a JC Penney store due to obstructed aisles and display racks that were so close together passage in a wheelchair was impossible from any angle.
So I spoke with store personnel who were uncooperative. At that point I determined that it was appropriate to take pictures of the areas, especially since I had noticed some access problems on previous trips to this store. I'll file a complaint with the Department of Justice.

It's important to enforce our rights under the ADA - not just for ourselves but for the next person who comes along in a wheelchair. If we don't take the time to do so, the same obstacles will be there the next time someone else needs access.
Click above for a link to ADA resources.

Mental health and disability advocacy links

This is a great resource for mental health and disability advocacy resources.

A new blog: Receiving Light

May all your expectations be frustrated.
May all your plans be thwarted.
May all your desires be withered into nothingness.
That you may experience the powerlessness and the poverty of a child and sing and dance in the love of God the Father, the Son and the Spirit.

Amen

Paula from More Light has started a new Catholic blog. She posted this prayer on the blessings of frustration which I thought I'd share.

"So what's in it for me?"

I found this article by a college professor writing under a pseudonym who discusses, quite candidly, why he (or she) chooses not to do more at his job. One of the main points of the article is that he (or she) works to buy things for his or her family and taking on extra work leads to time away from his or her family, which is why he or she works in the first place. After explaining that, he or she then rationalizes that the dean, who is single and has no family, may not understand because he or she has no family.

What do you think?

Feel free to leave your opinion because, after all, we have free will and free speech...and commenting is free.

Down Sydrome Ireland seeks protection for disabled under law

"It is helping to collect a petition of a million signatures calling for the full inclusion of every European citizen with disabilities.

Spokesperson Pat Clarke says that at the moment, many disabled Eastern Europeans are abandoned in institutions from a young age."

Via Belfast Telegraph

God only knows

There are moments when I realize that my experience as a person with a disability, even if said out loud, would most likely be misconstrued and it's best just to keep my own counsel. There just aren't a lot of quads around to talk to who can relate.

In those moments I turn to God. I know He knows, without me having to explain, what is weighing on my mind. Often I find it's a tremendous relief to be able to let go of my human concerns about the particular problem or experience and have a dialogue that's spiritual in nature.

When I pray, I don't have to consider someone's human limitations. I'm talking to God.

When I pray, I don't have to worry that it's almost 2 a.m. God's available 24/7.

When I pray, I don't have to explain what I mean. God is omniscient.

It may sound humorous to say that I realize that "God only knows", but when I'm feeling the kind of deep hurt that comes from feeling rejected for who I am, there's nothing funny about my state of mind, My usual sense of humor fails me when people disrespect me because I'm a quadriplegic and have a disability.

Every time this happens, my identity as a person with a disability becomes stronger. Rather than wish for my disability to go away, I yearn for the social justice that would free us from the shoddy treatment we sometimes encounter that sends us negative messages about our place in society.

And I'm learning that my disability is not the problem. It is the failure of human beings to acknowledge the equal worth and dignity of each other that is the real issue. Why that is so difficult is beyond me.

God only knows.

"Why 'Special Needs' applies to you too"

A mother describes how her reaction to people with disabilities changed after having a child with a disability. She shares the insight that any able bodied person could become disabled or have a loved one become disabled at any moment, completing changing his or her idea of how to treat people with disabilities.

Prenatal Screenings: Church responds to recommendation for Down syndrome tests

Via St Louis Review Online

"It is not enough merely to affirm the rights of people with disabilities. We must actively work to make them real in the fabric of modern society. Recognizing that individuals with disabilities have a claim to our respect because they are persons, because they share in the one redemption of Christ, and because they contribute to our society by their activity within it, the Church must become an advocate for and with them. It must work to increase the public's sensitivity toward the needs of people with disabilities and support their rightful demand for justice. Moreover, individuals and organizations at every level within the Church should minister to persons with disabilities by serving their personal and social needs. Many can function on their own as well as anyone in society. For others, aid would be welcome. All of us can visit persons unable to leave their homes, offer transportation to those who cannot drive, read to those who cannot read, speak out for those who have difficulty pleading their own case. In touching the lives of men, women and children in this way, we come closest to imitating Jesus' own example, which should be always before our eyes."

-Pastoral Statement of U. S. Catholic Bishops on People with Disabilities, 1978 (Updated 1989)

Medicare Independent Living Act

Via the Roving Activist

This bill is to eliminate the "in home" restriction on equipment which is outdated, outmoded and unfairly restricts the mobility of many people with disabilities. It will be introduced within the coming weeks.

"ACTION:

The National Council on Independent Living (NCIL) and the ITEM Coalition request the following action:

Please call your Representative toll-free via the Capitol switchboard at 1-877-224-0041 and ask that he/she become an original cosponsor of the Medicare Independent Living Act. "

From bad behavior to criminal: when a pca crosses the line

I've received some email and comments describing behavior by personal care assistants that crosses the line from "bad behavior" to criminal behavior. I'd like to make a few comments.

1. It is never okay when a pca threatens you with physical injury and "rages" at you to intimidate you
2. It is never okay when a pca hits you, your pet, throws objects around or displays violent behavior
3. It is never okay for a pca to manhandle you - force feed you , handle you roughly, drop you deliberately or engage in other abusive behavior to "teach you a lesson".
4. It is never okay for a pca to steal money from you, run up long distance charges on your phone, use your cash to buy things for themselves without your permission or take your car or bank card
5. It is never okay for a pca to sexually abuse you, fondle or touch you inappropriately or force you into having sex with them or anyone else


When a pca crosses the line into abusive and criminal behaviors, calling the police is appropriate so that you are protected and your safety is assured. See a doctor to report any injuries and have them treated.

Sometimes agencies not only fail to take proper action, but according to many people, the person with a disability is "punished" by having no aide sent. All care is withdrawn which is neglect.

The appropriate response is that these aides be reported to authorities and properly charged. In the meantime, your services from the agency should continue uninterrupted. You are not the one who crossed the line. Reporting this behavior will help stop them from doing this to someone else.

Many states have disability ombudsman offices and Offices for Protection and Advocacy for the Disabled. There is also free counseling available for crime victims. If you are unsuccessful getting help on a state or local level, consider contacting NARPA, a national organization for protection and advocacy. Their link is above.

The disability hierarchy: and then we do it to each other...

Over at the 19th floor, Mark is writing about the disability hierarchy. He links to a study about the prejudices toward the disabled - by the disabled. Click above to check it out.

Stamping out sterotypes

"Stereotyped views frequently act as self-fulfilling prophecies, forcing the
person with a disability into a role that can then be used to justify the original
treatment."
-Disabled We Stand, A.T. Sutherland

Last night at the dinner with my Ski for LIght* friends, there were seven tables of guests. Our table consisted of a few guides, five blind people and one quadriplegic. It was a lively table, full of much laughter and activity. The other tables had guests who were able bodied.

About halfway through dinner, I noticed people looking over at our table from the other tables and smiling. This was a switch from the beginning of the night, when most of the guests looked away. Then a few people wandered over from the Sons of Norway table to ask us about our ski trips.

WIthin ten minutes or so, the people at the table closest to my chair began to join one of our conversations. Then a few others moved their chairs so that they were, technically speaking, at our table. By this time, a number of people from our table had joined in the dancing.

By the end of the night, the lines of demarcation that I often encounter at social events seemed to have evaporated. Several of the hosts visited at our table and, as other guests bid their farewells, we met quite a few of them and chatted.

I strongly believe that many stereotypes do act as self-fulfilling prophecies which may force us into certain roles. One of these stereotypes is that people with disabilities are tragic figures. A corollary of that is that we are no fun to be around and not people you would invite to a party.

Nothing is further from the truth. People with disabilities are no different than anyone else. Given the opportunity, others can see that. When we are literally put into close quarters near able bodied people who have not been around us before, it is amazing to watch how their stereotypes about us start to dissolve.

Therein lies the solution, but the difficulty can be that the social exclusion which we still face as people with disabilities does not provide enough opportunities to literally get into the door for many of us so that we can disprove these stereotypes. This is added to by the fact that many of us become socially isolated due to poverty and lack of access to equipment or transportation.

Too few of us have the opportunities and resources to "mingle" , for lack of a better word, out in society in the way that I experienced last night. As a result, erroneous stereotypes still abound. It is not just our loss that this occurs, but the loss of society in general, although most people will never know that truth.




*Ski for Light is an organization that provides opportunities for visually impaired and mobility impaired individuals to ski with the assistance of sighted guides.

Doing the electric slide in a wheelchair - no problem!

{visual description: A boy and a girl in traditional Latvian folk dancing garb are shown dancing.}

I love watching people dance. Tonight at a party for one of my Norwegian friends, a table of her friends from her dancing club performed a few numbers. It was wonderful. Some of the guests, including some of my Ski for Light friends who are blind, joined in. They were teasing me about coming out onto the dance floor, but I pointed out that the part where they go to the right eight steps, then double back two, clap their hands and go right again might wind up with a few sore ankles if my wheelchair was out there.

My friends pointed out that I figured out how to do the electric slide a few years ago at a Ski for Light party and everyone had said that couldn't be done! True enough. But that's only because we got tired of doing the "YMCA" by Village People over and over again and asked the d.j. to liven it up. When he picked the electric slide and I said I was having trouble in my wheelchair doing it, it became a group project to figure it out. And, yes, if you're clever enough, you can make a wheelchair go sideways. Or close to it.

That's how Ski for Light is. We never abandon any project, no matter what lengths we have to go to aid one another. Whether someone is struggling learning to ski , dance or conquer their fear of singing in the talent show, we stand as a group rooting each other on.

And I'm proud to report that one of my very talented friends, Frank Senior, a long time Ski for Light participant, is continuing his music career. Frank is a recipient of one of the most prestigious awards, the National Endowment for the Arts. He produced and performed a series of concerts in the New York area and is a featured vocalist on the CD “New Standards” produced by Robert Kelley. You can listen to him sing at the link above.

Vermont lawmakers vote down physician assisted suicide bill

Legislators said they are in favor of "death with dignity" however but there are too many details to work out.

Behind closed doors: when a service does us a disservice

When all is said and done about funding difficulties for personal care assistants, I find that there are still inherent difficulties in the arrangement as it is set up in many areas.

We can all agree that the pay scale is horrendously low for personal care assistants. These folks are being asked to perform a multitude of tasks that vary from day to day. Some of the tasks are distasteful, boring or time consuming. It is, in some respects, a job many people would not want. And nothing I write from here on in changes any of those injustices from the pca's point of view. Like many other people with disabilities, I can understand that these problems add to high turnover and poor attitude toward the job.

As a person with a disability, however, my perspective is different. I feel that even if we solved some of these problems, the way these services are being delivered is a fundamental part of the problem. I cannot tell you how often I have worked with a personal care assistant (and make no mistake about it - having one is work) and found it a frustrating experience. And this happens even when the pca has demanded - and received- extra compensation from me in order to even show up. The money is not the entire issue. Because of the way society views people with disabilities, we need to revamp the way these services are provided. This is because the current delivery of services is based on outdated beliefs that most people with disabilities are passive recipients of services.

Why do I say this? Because, in my past experience*, the majority of pca's do not treat their job as a job. They do not show up on time. They are not accountable for what they do - or do not do. This means I have to bring in another person to finish or do their work. They call their friends and family, doctors, car mechanics, etc. during the short hours I am allotted while my time is tied up waiting for them to help me. Some of them bring food and try to squeeze in a half hour of eating during my allotted hours.

This litany of rants is not to condemn pca's - although it may be taken that way . It's to highlight the fact that, along with adjusting the pay scale for pca's, we need to take a good hard look at the level of care that is being provided. I certainly support better pay and working conditions for pca's. I used to work as one for four dollars an hour years ago.

But I also want to see a dialogue started that includes our voices - those of us with disabilities who hire pca's and know the ins and outs of how to and how not to do the job. Being a pca is a service job that involves providing a service to the consumer. Too many times it is treated as if it is not about the person with a disability at all but a matter of just showing up - whenever - and writing it down on a piece of paper. We need a system where there is accountability for job performance just as there is for other jobs.

Saying these things, of course, puts me out on a limb. Any time any of us speak up about poor service from a pca, we put ourselves at risk of being the problem. We all know the drill. The agency tells us we are being unreasonable and difficult. Social workers tell us we have to make compromises. A checkmark is put next to our name on the agency list and we are told we have to find our own aides. This is what keeps many people with disabilities quiet.

Meanwhile we're looking across the room at a pca who is on our couch, watching our TV and eating Cheese Doodles. And we remain hungry, unbathed and in the same clothes we were in when she arrived.

Even considering backlash, we need to speak up about what goes on behind closed doors.

(*This post specifically refers to pca's I have worked with in the past.)

Disability blog carnival 11 is up....

The topic is independent (free, liberated) living! I found some new blogs over there which always makes me happy

Futile care law - clock is ticking on baby in Texas

A petition has been started for Baby Emilio - his ten day time period under the futile care law, which was up on Friday, March 23 (when his life support would have been removed against the wishes of his mother), has been extended to April 10 . Kay over at the Gimp Parade has written a post summarizing the information on this case.

Under the Futile Care Law, physicians must give only 10 days notice before they withdraw treatment if further care is deemed medically futile, even over the wishes of the patient and family.

You can sign the petition here.

Growing up with a disability: 3-21 World Down Syndrome Day

3-21 World Down Syndrome Day

Thanks to David for this post - today is World Down Syndrome day...and he's posted information over there, including links to web sites.

And here's one I found through Title Varies Slightly: Cause of Our Joy

Day by Day with Parkinson's and Peripheral Neuropathy: End of One Journey - The Beginning of Another

Day by Day with Parkinson's and Peripheral Neuropathy: End of One Journey - The Beginning of Another

Dirty Butter (a friend, frequent visitor and commentor over here) lost her dad yesterday. Please keep her in your prayers. Here's the link if you'd like to leave her a message of condolence.

Repost: Tonight on PBS Through Deaf Eyes

Through Deaf Eyes"

a two-hour documentary program exploring nearly 200 years of Deaf life in America.

PBS is airing this show on Wednesday, March 21 at 9 pm ET (check local listings).

via SDS list serv

"Changing Exclusion to Inclusion"

How one grade school teacher handled it when students excluded another

Via the NY Times

Don't tell me you're bored....

I learned as a kid never to tell my mother that I was bored. Inevitably she would "find something for me to do" and would remind me that only a lack of imagination caused boredom.

I get emails from people who are recuperating from injuries, convalescing and sometimes have limited physical energy who tell me they're bored. No, I don't lecture them, but I do want to make a suggestion!

Learn Out Loud offers links to podcasts (free) from major universities and other sources. If you click above, you'll be able to pick from lectures offered at UCLA, for example, including genetics, oceanography, archaeology, psychology and politics (among other subjects). Think of how you can dazzle your family and friends with witty conversation when they show up expecting you to look...bored!

And once you're over there, look around. You'll find books read aloud and all kinds of other interesting things. Come back and leave a comment if you find something you enjoy.

Now I don't want to hear that you're bored....

Inflated prices on medical equipment leave us with pictures from catalogs

{Visual description: Photo of magazine clippings on a corner wall above a table containing bottles.}

I hear story after story from people trying to buy medical equipment, ranging from wheelchairs and hospital beds to hearing aids. The terms "denial of claim" and "restricted reimbursement" are usually part of these conversations.

What I don't hear being discussed is the fact that prices on many of these items are wildly inflated. Bloated prices and high markups have been encouraged rather than discouraged for years in an industry which excuses its high prices due to the fact that it cannot mass produce most of the equipment it sells.

This is a dangerous argument for several reasons and those of us in the disability community need to take heed. First of all, with the advent of new technologies, many of the items we need are getting increasingly expensive. Insurance companies are denying more claims since they don't want to be saddled with these costs. Our options for lower cost items are decreasing since companies, eager to sell these items, push them to the exclusion of lower cost alternatives. Go to any disability expo and check out the items that vendors are showing. The prices are in the thousands of dollars range now.

Secondly, as our choices for lower priced alternatives narrows, there is no protection on the prices that can be charged for these higher priced items. Even as the numbers of people who need these items increases as baby boomers age, there is no regulatory control to keep the industry honest in terms of numbers. Just as the auto industry is regulated, allowing consumers to see the invoice on vehicles and then compare dealer markup, we need laws in place that make the industry accountable.

The only cost saving measures being taken at this point are by those who have traditionally paid for these items - such as insurance companies, Medicare/Medicaid, and workers' compensation. They are setting and enforcing policies limiting reimbursement amounts and denying claims to items. This leaves more of us with disabilities in a position where we will be raising money privately or spending our own or our families' money to purchase some of these items if possible.

It's time for us to speak up in numbers to question why the inflated costs of this equpment are only being dealt with in this one sided manner - to protect the financial interests of insurers and providers, but not to protect our access to equipment.

Unless we let our legislators know that we need laws protecting us as consumers of medical equipment, wildly inflated prices will continue. And these items, intended to improve our quality of life, will be available to an increasingly small number of people with disabilities.

Opposed by activists, quadriplegic appointee steps down

He was appointed by Governor Schwarzenegger to California's Building Standards Commission . The article reads:

"...over the past several weeks, disability rights advocates have been gathering in large numbers at hearings to show their opposition to Blackseth's confirmation. They claim that Blackseth, who works as a consultant for businesses on accessibility compliance with the Americans with Disabilities Act, has sided too often for his clients, and that he has actually tried to help businesses get around the law rather than follow it."


Via Inclusion News Daily

"School Controversy in Columbus"

Over at Planet of the Blind, Steve has written a post about the controversy over combining deaf and blind students in the same school. Some deaf advocates don't believe that deafness is a disability and are saying it is inappropriate to mix the two groups. I believe that Steve's post is a brilliant response on the subject from an educator who is well versed in disability issues and have forwarded it to many of my friends.

It begins with:

"Some days the sheer volume of the injustices one sees either globally or locally is enough to drive one into numb silence. .."

Read this.

God has a sense of humor....

[Visual description: Man standing at malfunctioning ATM machine]

The snow melted enough that I went out today. I had a heck of a time finding a spot I could fit my car in because the snow wasn't shoveled out of the handicapped spots. I just parked crooked in a spot. And a half. Oh well.

My first stop was an ATM machine - since I had one dollar left since the snowfall.

I rolled up to the machine and saw the message: "This machine is not in operating condition. Please find another ATM machine. We regret any inconvenience."

Inconvenience? ARRGHHH!

No, I didn't say it out loud. I quietly left, hauled my wheelchair back into my car and drove to the bank. Drive through windows. Great invention.

"For Some It's the Present" : Nursing Homes for People with disabilities

I found this gem of a post over at Title Varies Slightly in which she writes about her experiences while in a nursing home.

She writes: "I wanted books. I wanted conversation. I wanted to see anyone with not-gray hair NOT in a uniform. Friends asked, “Is there anything you need?” I answered, “Quarter Pounder with cheese and large fries please.” They thought I was joking. I wasn’t.

The night the kitchen caught fire, they didn’t evacuate. They closed us all into our rooms so they would know where to find us if they had to evacuate later. I had the immense good fortune to be closed into the TV room (my room was on the other side of the kitchen), so I got to watch the whole drama unfold through the plate glass.

I was bullied and bossed by teenage employees, received my medications on a wildly varying schedule, and sometimes would have been given someone else’s meds if I hadn’t been aware enough to know the difference."

She was refused pain medication and placed in the Alzheimer's wing due to a bed shortage - and kept there. Go on over and check it out.

We still have so many young people with disabilities living like this every day.

Judge rules cattle prod cannot be used on 48 year old man with autism

..his parents disagree.

Via Inclusion News Daily

Me, the Rabble Rouser :On the radical idea of giving rides to people to Mass...

[visual description: cover page of comic book entitled Rabble Rouser showing a superhero in a green suit amidst a crowd with the red suited Human Torch (in flames) superhero next to him.]

Yesterday, Janet pointed out that I was in good company as a rabble rouser. I really appreciated her perspective on that. Thanks.

I find it extremely sad that positing an idea that would help people get to church would set off such a negative reaction. Maybe it's become radical to think of sharing the inside of one's vehicle with - egads - another human being. Perhaps that's only do-able when using those special commuter lanes on a highway to get in the right lane.

But let's remember back to high school - and college. When everyone didn't have cars and giving rides was just part of being a friend. I remember going to drive in theaters (yes that dates me) with a car full of friends. It was kind of fun giving rides. Gives you a chance to know someone better. It's a green thing to do - same gas, more people. And you are helping someone out.

Title raised some practical issues in her post below entitled Rides to Mass , including: some people with disabilties cannot get in/out of high vehicles like SUV's (others can, it depends on the disability); sometimes you may need to lift a wheelchair or walker into your car; you need to be clear about scheduling and frequency of rides and sharing gas expenses. As for the person with a disability, communicating about these issues is part of your responsibility as well. Explain clearly what your needs are before you accept a ride, especially if you require help getting in/out of the car or with your equipment. Ask around for backup rides or alternate rides as well. Try not to turn the offer of a ride to Mass into a ride to the grocery store or your aunt in Poughkeepsie. You know what I mean.

It's helpful to deal with these practical issues the first time you talk to each other about the arrangement. That will minimize miscommunications.

Rabble rouser. Yeah it fits.

Catholic Carnival 111 - With All the Saints

In particular, check out Monastic Musing's "Why Not Me?"

Futile care law in Texas -

Care of a 16 month old baby with severe disabilities has been deemed "futile" in an Austin Texas hospital under the Texas Futile Care law which I wrote about recently . This means that a 10 day countdown begins. Not Dead Yet has issued a call to people to speak up - information is here.
The baby's name is Emilio.

"Rides to Mass"

Via Title Varies Slightly

Her take on getting to Mass in her motorized chair (when it's working) which takes nearly an hour-

"I don’t drive a motor vehicle, not because of my legs not working well, but because I also have really poor depth perception. There are enough lousy drivers on the road without me adding to the total. Most days of the week, I can use the buses to shorten my drive, but not Sunday.

It’s a good route, main roads and curb cuts all the way after the first five minutes. In most weather, it works fine. I bundle up for the cold, swathe in plastic in the rain, slap on a hat in the sun. I’ve got a cellphone, and if the chair or I fall ill, I can call for help.

Some of this is stubbornness. Some of this is over-independence. But most of it boils down to this: Asking for rides to Mass, any more than once or twice a year, DOES NOT WORK."

click above to read the rest..

The Spiritual Experience of Disability

I've been asked many questions over the years about my disability. But I'm always surprised by how infrequently I'm asked this question even in religious settings: what is your spiritual experience of disability?

The answer to this , of course, is different for everyone with a disability. In my case, the experience of living with a disability has deepened my faith as a cradle Catholic. I pray more, feel the presence of God more and have been led on a journey that I never anticipated - one that's increased my awareness of myself as a member of a larger Body of Christ.

On the day of my accident I remember hurrying around. I was leaving for a vacation and it was the first one I'd taken in a long time. As I checked off everything I had to do on my list, I remember thinking that I didn't have time to take this vacation either. But all my plans were made so off I went.

When the accident happened, my first reaction was the same: "I don't have time for this." I had no idea that I was about to undergo a life changing transformation, one that made my "busyness" literally cease and desist. My identity, so closely tied to my occupation and business and what I did every day in that role, began to painfully change from that moment on. As the gravity of my injuries become apparent to me, I stopped taking things for granted that I always had. I realized for the first time that not only was I mortal, but I had been "temporarily able bodied".

Shock set in as I realized I was not going to get "better" physically and would have a disability. Denial kept dancing around me, as did anger, bargaining with God and all the typical Kubler-Ross reactions. I became stuck in anger after I was told that I would be a quadriplegic. This was very painful and a wall grew up between myself and any kind of spirituality during that time. I had no idea that living with a disability could be a positive, life-affirming experience. People were put into my life who helped me learn that lesson.

After several years I emerged ready to move into acceptance and began in earnest to have a dialogue with God for the first time since my accident. This spiritual connection grew over time and deepened enough that I sought ways to serve and give back to others, recognizing for the first time the many kindnesses I experienced as I healed. The love I received from others was very healing. As my identity as a member of community grew, I learned a great deal about inclusion.

My blog is an extension of these experiences as well as a part of that journey. My spiritual experience has run the gamut but whenever I receive Communion I am reminded that I am a member of the Body of Christ and the mystical experience of that Sacrament reaffirms God's love for all of us.

"We, the disabled community, as we demand a place in the sun, are a reminder to the whole human family of the need for justice, for inclusion. We stand uncomfortably, often within our faith communities, reminding them that they cannot be who they are without US. We do not ask for their pity, we ask for justice, and we say to our faith communities, “Don’t include us in your community, but together we must create a community which is for all of us. And that is very different”. We are not asking the faith communities to be nice to us and feel good about it, We are saying, “You cannot be a faith community without us”.

Portion of the keynote speech entitled ‘Exploring the spiritual dimensions of disability’ given by
Father Michael Lapsley

Shut up and be humble you cripple?

Luke 18:9-14 "Also He spoke this parable to some who trusted in themselves that they were righteous, and despised others: Two men went up to the temple to pray, one a Pharisee and the other a tax collector. The Pharisee stood and prayed thus with himself, 'God, I thank You that I am not like other men--extortioners, unjust, adulterers, or even as this tax collector. I fast twice a week; I give tithes of all that I possess.' And the tax collector, standing afar off, would not so much as raise his eyes to heaven, but beat his breast, saying, 'God, be merciful to me a sinner!' I tell you, this man went down to his house justified rather than the other; for everyone who exalts himself will be humbled, and he who humbles himself will be exalted."

I got lots of hate mail yesterday. It didn't particularly make my "snow day" pleasant considering I was stuck in here. But hey. It's a free country. This one particularly struck me as needing a response since it's referring to a theme that's been repeated over and over - that by working toward inclusion I am sinning.

One reader emailed me this passage and told me to read it because I am gravely sinning against others by speaking up for inclusion "to exalt my own agenda" and told me to "shut up and be humble you cripple".

Let me take this opportunity to put things into perspective.

Inclusion is not my agenda alone. Maybe this blog is your introduction to it, but there are disability ministries in churches all over the country which are supported by the USCCB. If you read around on this blog, you'll find documentation of this. Under Catholic resources on my blog links you will find information.

The point of inclusion is that no faith community is complete when it excludes those who are part of the Body of Christ.

WWJWDD or What Would Jesus with a disability do?

After I posted "Missing Mass", the reason why I put up comment moderation came back to me. I was flooded with emails from people admonishing me for "complaining" "making trouble" "being ungrateful" "having a sense of entitlement" and "not knowing my place". I also received a whole bunch of numbers of taxi cab companies. Uh, thanks. Anyhow, considering the fact that most of these either contained profanity or attacked other commenters (not just me) I didn't put them up.

But what would Jesus with a disability do? Am I indeed breaking all kinds of rules by pushing for inclusion of those with disabilities and, among other things, requesting rides for them so they can get to church?

I honestly believe that Jesus would gather people with disabilities around Him and invite them with Him - not only to Mass, but to weddings and parties and other happenings. I don;'t believe Jesus would make an invitation conditional on the ability to cut up your meat or walk or see or hear. I don't believe Jesus would reject marginalized people because they are seen as punishments from God or some other nonsense.

Of course if Jesus had a disability perhaps He would need His food cut up. Or a ride. Or any number of things. Since he hung out with lots of people who had disabilities, I somehow think He would have been comfortable with accepting that help- and giving it -when He could.

And, yes, I think Jesus would have worked toward inclusion.

A Poem: Watch Out

Over at A Different Light

John Hockenberry speaks out on returning Iraqi vets and health care issues for people with disabilities

How living with a disability "exposes the big lie in American health care...that investing in acute care somehow reduces the need for rehab and broad social accommodations"

Via Blogenberry

"The Snow Job"

Via A Different Light

Via Gimp Parade: "Things that crack me up #19"

3 great photos on the theme of handicapped parking...NOT

Movimento Apostolico Ciechi

In Italy. This website is in Italian in the original. This was translated through Google and was a bit rough so I've taken the liberty of adding a few changes from my reading in the original....

"The fundamental elements of the charisma of MAC are:

a way of friendship between seeing and blind people and;

a experience of faith in Revived Christ;

a service to the blind ones neglected in Italy and the Third World."

Pope prays at Mass for the blind in St Peter's

Amy Welborn over at Open Book posted photos about this - I looked up the organization for the blind and their website is in Italian (don't know how many can read Italian but there is a link to it). Wanted to share it here!

Missing Mass...

Well the outside of my house looks like the monoski competition below. It was shoveled - well enough for an able bodied person. But there's snow on my windshield and I can't roll around the car to get it cleared off. Nor can I reach up that far anyhow, being a quad.

I always feel bad when I miss Mass, even when the reality is that I could go outside and get hypothermia trying to no avail to get there. I went out on the porch, looked at where my car was parked, where they shoveled and calculated how much arm movement I had, what angle the car would have to be at for me to have a chance - then started stopping able bodied people to ask someone to help - and pay them. But wait - I didn't get to the bank so I spent all the cash already getting help and I have one dollar left in my wallet.

No takers. Not for free. I've spent over 75 dollars since it snowed paying people to do things for me. That's on top of my aide coming over yesterday to make sure I have food. She's the only one who checked in wth me.

But getting back to Mass. In suburbia, apparently, we don't do rides to Mass. I know that's not true in the city because when I lived there or near to a city I never had trouble getting rides. I guess because fewer people have cars it wasn't seen the same way not to own a car or have transportation.

Let me add that to the inclusion list - practical needs of those with disabilities trying to get to Mass....bus routes, transportation, and, even when he or she drives, rides in certain circumstances.

And there's another thing. You know how they say check in with your neighbors who are elderly or disabled when there's bad weather?

Here's my situation: I have one dollar in my wallet from paying people to do things. My car is snowed in. So I can't get more money or get out. My aide is overworked, underpaid.

And I'm pretty independent when the ground is clear.

And I want to say this: I'm writing this to be honest about my own experiences - not to criticize anyone - just to point out the reality as a person with a disability. I also emailed some of my friends who use wheelchairs to see what they have to say - should be interesting.

Synchronized mono-ski expo

While I was sitting around today snowed in, I checked out some videos on YouTube of folks on mono skis and found this great clip of synchronized skiing. It also contains a very long and cool jump!

Disability set to nearly double among children in UK by 2029...

"THE NUMBER of disabled children in the UK is set to nearly double by 2029 as a result of childhood obesity, increases in pre-term birth survival rates and persistent childhood poverty, according to new research.
...
The research also claims that by 2020, the majority of people in their 50s will be disabled or will self-report long-term health problems, and that too many families are still not claiming their entitlement to Disability Living Allowance."
...
The article goes on to say : ".. if you are disabled in Scotland today you are twice as likely to live in poverty, be unemployed and have low skills...

With a rapidly ageing population, we need to harness the skills of our whole community and not consign disabled people to being passive recipients of care. Inefficiencies and needless amounts of money wasted on red tape could go back into the system to help lift more of these families out of poverty."


Via the Sunday Herald

A blessing from the hills of Tipperary

[visual description: A photo of Tipperary, shot from a hilly area showing the lush fields below.}
A blessing on their peaks,
On their bare flagstones,
A blessing on their glens,
A blessing on their ridges.

Like the sand of the sea under ships,
Be the number in their hearths;
On slopes, on plains,
On mountains, on hills, a blessing.

-St Patrick

"I strongly believe that it is important to level the playing field and give eligible individuals equal access to community-based services and supports."
--Senator Tom Harkin, upon introducing the Community Choice Act of 2007

Former Rosewood Center residents call for shut down

"Institutions are not a good place to have freedom."
--Michael Taylor, a former resident of Maryland's Rosewood Center, calling on lawmakers to shut down the troubled facility for those with developmental disabilities



Via Inclusion Daily News