Care: taking or giving ?

Needing physical assistance to do tasks has been a lesson to me about other peoples' assumptions. I run into folks, particularly when I try to hire help, who swear up and down that they get what it means, but some just don't. It can mean the difference between caregiving and care taking.

I prefer the term PA or personal assistant. Assisting means just that. If I need help turning a page, that's the job. Trust me. I've been a quad for seventeen years and know what I need help with and what I don't.

But some folks really dont understand the PA gig. Here are some signs that confusion reigns.

1. Telling me how to live my life by making inappropriate intrusive suggestions instead of doing the tasks assigned. I'm in charge even though I'm sitting down. Really.


2. Telling me all their problems as they work. This can be a total energy suck when it happens frequently and if they do this in conjunction with number one it inspires no confidence in their advice. Just saying.

3. Not understanding that unrelated extensive conversation is distracting and wasteful when resources are limited. Basically it means the list of tasks doesn't get done and then i have to bring in another person to finish. This also leads a hungry quad to say things such as. Could you make me something to eat while you talk about that movie you saw?

4, they think my personal preferences in food, clothing, etc. require approval. Just because someone cuts up my food doesn't mean I want them to choose what I eat. Someday I'm going to show up at their house at dinner to see if they eat veggies.

5. Constant supervision shouldn't be required. The use of a list makes sense . Yes I have to supervise what's done, but having to remind someone to do up to a half dozen things in a visit means they aren't using the list. This raises the question of who's taking care of whom?

6. Directly challenging or ignoring requests is inappropriate. Some folks just don't do certain things and it can be random and unpredictable . Trust me, waiting longer to see if I become cured doesn't work.

7. I realize these jobs don't pay much so I make compromises. But the other side to the coin is when someone takes advantage of that and keeps renegotiating the job. It's a bad sign when they ask me to round up the garbage, for example. Not really workable.


All joking aside, it's a very real fact that the quality of assistance I receive relates directly to how productive or not I can be. The longterm PAs Ive worked with have a common denominator : they get that they're here to assist and we carve out a fair mutual relationship based on trust and the recognition that I too am autonomous and deserve a full and productive life.

Now that's when taking and giving are both very appropriate.

Three Catholic Deaf events coming to NJ

Please spread the word about our 3 exciting Catholic Deaf events coming
soon to NJ:

1.
1st Annual Catholic DeaFest
Saturday, March 19, 2011 10 AM - 4 PM
Free Admission - Fully Accessible!
Catholic Center - Rutgers University
84 Somerset St., New Brunswick, NJ 08901
Keynote Speaker: Kate Slosar: FAITH IN ACTION
Workshops - Exhibits - Mass - Breakfast & Lunch - All are welcome!
For more information please contact:
Deacon Tom Smith, CSW 973-497-4312, TTY 973-497-4311,
VP 862-279-7645 or smiththo@rcan.org
Sr. Bonnie McMenamin, SSJ 856-583-6111, VP 856-283-3962,
or bmcmenamin@camdendiocese.org
Hosted by the Deaf Ministries of the Archdiocese of Newark, the Diocese
of Camden,Diocese of Metuchen, Diocese of Paterson, & Diocese of Trenton

2.
THE PASSION PLAY, America's Longest Running Play, is the dramatic story
of Jesus Christ's last days on earth. It is the modernized version of
"The Passion Play" performed in Germany since 1634, complete with large
cast of characters, breathtaking imagery and memorable songs. The
Saturday, April 16th, 2011, 2:00 p.m. performance at the Park Performing
Arts Center, 560 - 32nd Street, Union City, will again be
ASL-Interpreted for the Deaf by Kymme Van Cleef & Dana Fuller (courtesy
of ASL Interpreter Referral Services). "Deaf seats" are specially priced
at $21.00. Please contact Claudia at claudia@parkpac.org to reserve your
seats. Or call her on Relay (voice) 201-865-6980, ext. 12 for more
info.

3.
Catholic Deaf Retreat Weekend
Friday, June 3 through Sunday, June 5, 2011
Maris Stella Retreat & Conference Center
7201 Long Beach Blvd.Harvey Cedars, NJ 08008 www.marisstella.org
Deacon Patrick Graybill will present “Celebrating God’s Family”
For more information please contact:
Sr. Bonnie McMenamin, SSJ bmcmenamin@camdendiocese.org or
Kate Slosar mwdkate@aol.com
The New Jersey Catholic Deaf Pastoral Workers invite you to
“come to the seashore” and experience God’s wonderful love!




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"I felt it shelter to speak to you"

I have a few links to share about the importance of people with disabilities being heard.

In this blog post, Whose Voice Should Be Heard? its author includes links to blogs by folks with autism and discusses the issue of a mom speaking on behalf of her autistic son. Feel free to leave your comments over there and join in a discussion.

Pentimento Magazine
via its site:

The word "pentimento" refers to seeing beyond the surface.

Through art, photographs, essays, stories and poetry, Pentimento Magazine will ask its readers to see beyond disabilities and physical challenges, to see the ways in which we are all connected, and to find in our pages a sense of what the poet Emily Dickinson wrote, "I felt it shelter to speak to you".

The magazine cover will feature artwork by a disabled child or young adult. Each issue will include a section devoted to writing by readers on various topics, an unedited first-person perspective piece, essays, poetry, photographs and disability-related quotes.

Submissions may be by a disabled individual or an individual who is part of the community such as a family member, educator, therapist, etc.

h/t to Jennifer Fitz

And here's a link to my blog A Different Light with poetry and short stories.

Laura Hershey on Gratitude

"We have to demand the things that are essential to our lives, equality, and quality of life. We must refuse to feel gratitude for these, except the normal level of gratitude that anyone might feel for living in a time and place that still supports human life."
Laura Hershey

I'm missing the presence of Laura Hershey on my Facebook page. In fact I've had difficulty going over there lately. I miss her posts even though we never met.

Her wise words still remain.

I see land- ho!

As the snow disappears, the landscape I use to get around returns. I discovered years ago when I first started to use a wheelchair that a map began to form in my head of where there was and wasn't access.

That map changed when I began to use a power chair instead of a manual one. It also changes in winter when street corners, curb cuts and sidewalks as well as accessible parking become impassable in some places.

This winter that was true of most places.

Someone once said those of us in wheelchairs are social pioneers. We venture out anyway despite conditions. We encounter obstacles. We are not only resourceful, but adventurous.

But it would be nice to be able to get rid of those maps, to know that the promised access of curb cuts and accessible parking and sidewalk access would be there during winter months.

It makes for a long journey when it's not.

Gutter - all Sounds

We're having a big meltdown here. All the snow from winter is rapidly disappearing. Last night in bed I could hear the gutters groaning from being overworked. A couple of squirrels were tapping on the gutters. It sounded like Morse code.

I kept thinking about gutters because the noises were so loud and that reminded me of a wheelchair tennis match I played in Lancaster Pennsylvania. I was in the middle of a three-hour match when a bug flew into my right eye. I had my tennis racket taped on so there was no way I could get my glasses off without bonking myself in the head. Since the person helping me had gone on a break, I played on without depth perception.

I went back on the court and tennis balls flew by. I took shots at them but kept missing. My opponent began to hit harder and harder. The score became ugly. I reached up as far as I could toward my eye but only managed to get sunburn lotion in the eye for the bug to swim in. My eye began to sting and tear as people watching yelled encouragement at me.

For some reason I thought about Monica Seles and her grunting. I had to do something to distract my opponent and I realized that grunting might feel pretty good. So the next time I hit the ball I let out a guttural sound that was so loud it surprised me. My opponent missed the ball. I served again and let out another grunt. She missed again. I rolled towards the ball grunting and sounding like a warrior at battle.

In tennis matches, each player not only watches the ball, but they study their opponent. I knew that she knew something had changed for me. But she wasn't sure what was going on. And that was the only thing in my favor.

Somehow it worked. She stopped hitting balls so fast and peered over at me quizzically wondering why I was grunting. Maybe she was just entertained by the whole thing. But it bought me enough time until my helper returned and we were able to get everything out of my eye during a break. I didn't win the match but at least kept the score close.

Guttural sounds.

I guess I'm lucky the squirrels don't know about that.

Come to the Table : A Passover Seder for Parish Use

The second edition of Come to the Table: A Passover Seder for Parish Use by Meredith Gould is now available. The book has been used for the past five years by Catholic parishes and has now been revised for a larger audience.

It includes:


* Historical and Biblical details about Passover with citations to scripture.
* The meaning of Passover symbols and their significance relative to Eucharist/Holy Communion.
* A traditional seder liturgy adapted for Christian use.
* Hebrew prayers in English.
* Easy-to-follow instructions for preparing the Passover meal and conducting a seder for small and large groups.

Meredith Gould writes about why she wrote the second edition over at dotMagis :

More important, my ongoing formation has sparked a deeper yearning to reach out to Christians beyond my Roman Catholic sisters and brothers, something I do in part by serving as abbess of @virtual_abbey. As a result, the second edition has been revised for easy use by any liturgical church whose Holy Week observances would be enhanced by a seder.

For Jews, Passover is a holiday commemorating liberation from bondage as well as God’s faithfulness. My hope is that the new edition of Come to the Table deepens users’ appreciation of Judaism and serves as a reminder that Jesus invited everyone to the table. Thanks be to God.

The book is available at CreateSpace (discount for five or more copies if ordered through there), Amazon (where it's bundled with two other titles by Meredith Gould The Catholic Home and Why Is There a Menorah on the Altar?) and will be available in a Kindle edition soon.

What I learned from the Grammys

1. My cat really likes Justin Bieber. More evidence that a kid was in his past. Maybe. Baby. O

2. Arriving in an egg doesn't disqualify you for some awards

3. Streisand is timeless. There is also a cool organization called MusicCares.

4. Katy Perry got married

5 No matter when I tune in I always feel as if I've been watching for five hours but can't seem to turn it off.

6. Yes he still looks like Doogie Howser.

7. I should have read a book instead

8. I prefer the Tonys.

9. Mick Jagger is as skinny as ever.

10. I'll probably turn it on again next year.

More on MusicCares here. (will add link Asap) feel free to google in the meantime.

Social Model of Disability keep it real.wmv

This video discusses the social model of disability v the medical model. It addresses, physical barriers, such as access issues, as well as attitudes, but also points out, as an individual with Asperger's, how that affects situations.

If anyone has any thoughts about her viewpoint, please feel free to leave comments.

Fly, hawk,fly!

One of my aides has been telling me she saw a hawk outside. This morning I saw it over my bowl of raisin bran, at least it's tail end. The hawk is one of those creatures that's beautiful from any angle.

Not so much always with humans. Take it from me, after seventeen years in a wheelchair I've seen a lot of rear ends. Trust me, those who think people in wheelchairs should feel self conscious would be in for a rude awakening if they spent some time following bipeds around.

Not that I think anyone should feel self conscious. Well maybe the folks who cut me off by doing that stepping to the side maneuver right in front of my my wheelchair. But that should be be because they've shown their ass in a different way.

I get a lot of advice from non disabled people. Most of it is useless when it comes to living with a disability. It used to derail me. Now i pay very little attention. In fact I tune out when people who have never lived with quadriplegia tell me how I should be doing things.

Aides do this a lot. Not all of them, but some of them. They think part of their job is to tell you how to live as if being physically disabled means you're not autonomous. They try to tell you what to eat, decide where to put your things without letting you know where they are and even pick and choose as to whether they'll do what you ask. They show up late or extremely early, assuming you could t possibly be doing anything because when they're not present, they figure, you're probably not able to manage at all. Worst of all they decide what help you need, depending on their viewpoint. Some give more help than you ask for while others decide you need toughening up.

In between visits, I used to scratch my head trying to figure out what I was doing that elicited this behavior. Was i not being clear? Why, when i had supervised large groups of folks without difficulty before, were people suddenly not following my simple and reasonable instructions?

Then I learned the word ableism.

It was like seeing the rear end of that hawk this morning. It was a beautiful thing. I knew what I was looking at. I was free of all the doubt and second guessing.

Fly, hawk, fly!

And chocolate too!

Some of you know that my laptop has been nicknamed Lazarus because it's come back to life so many times. Meredith kindly sent me her laptop as she's upgrading and I'm so thrilled to get it. It came today via priority mail and I was waiting by the door.

"It's heavy", said the mailman.

It's not heavy, it's my laptop...well anyway....

The box was covered with Jesus tape, as you can see in the photo. I've even provided an up close look at it. And Meredith included York peppermint patty chocolates too!

Am looking forward to doing lots of writing on it. Thanks so much, Meredith.

The heat feels better

A friend of mine was quick to tell me that my heat is no different due to the new thermostat I can now work myself because it's accessible.

I explained that the heat feels better now ( truly it does) after 17 years of not being able to adjust the thermostat myself.

In other news around here, the rescue kitty keeps growing. He barely fits into his new round cat cubicle. We may have to go up a size sooner than expected. He's mastered the art, known only to felines, of squeezing through the hospital bed sidebars and emerging whole. I keep checking body parts but they're all present despite his almost daily prat falls. The other morning I woke up to him plummeting to the floor, all four paws braced, because the overbed table tipped.

Sometimes it feels like I'm living in a Tom and Jerry cartoon.

Good morning, I said.

Looking nonplussed , he simply meowed.

How's the heat? I asked. Need me to change it, because I can?

And so I did.

The Day - NL school funding at risk over ADA | News from southeastern Connecticut

"Not one classroom at New London High School meets the requirements of the Americans with Disabilities Act.

... students [using wheelchairs] must use a lift elevator at the school's loading dock to enter the cafeteria of the 40-year-old building.

"One senior (who is handicapped) ... has not experienced 90 percent of the high school,'' said William Satti, who appeared before the City Council Monday night advocating for his son, a student at the school who is [a wheelchair user] and needs 100 percent care."

Read more....

The Day - NL school funding at risk over ADA | News from southeastern Connecticut

CBC News - Edmonton - Help comes for girl in school bus fight

"An Edmonton woman who uses a wheelchair is overwhelmed by offers of help she has received since revealing how the city's icy and snowy sidewalks made it impossible to take her granddaughter to school".

Read more: http://www.cbc.ca/canada/edmonton/story/2011/02/08/edmonton-school-bus-grandmother.html#ixzz1DTVoGaoG

Images of Disability in Hollywood

This video is making the rounds on the internet. Wanted to post it for those who haven't seen it yet. And if you wonder why the disability community pans Hollywood for its treatment of us, check it out.

[Warning: Includes nudity and violence.}

Hollywood Images of Disability (CHF EDIT) from salome chasnoff on Vimeo.

Straight to Heaven

I just heard that my uncle Bob passed away. He was an uncle by honorary title, not blood line. And I know he went straight to heaven.

Uncle Bob and my Aunt Gertrude adopted three children. All of us were like cousins. Bob was the one who put as many kids who happened to be around, seven of us and a few neighbors kids, into the back of the station wagon and took us to Dairy Queen. He patiently took our orders, letting us pick what flavor we wanted, what toppings we wanted , no matter how long it took as we sang Beatles songs. Trust me, we were no choir either.

I know Bob had a job, but unlike other adults, he never acted too busy for a fast game of hoops or baseball. We lived down the street for many years and I never quite understood that he even had to work.

There are so many great stories about Bob, too many to tell, but mostly I remember what he said to me after my accident. He totally believed in me, in all of us "kids". So as usual he made sure I knew he had no doubt I could deal with things, the way he did for Aunt Gertrude as she struggled for a decade with cancer, the way a dad would. With my father long gone, that was special. In his usual loving way, Bob always had everyones back.

As a journalist for many years, Bob must have seen a great deal but he never spoke about that, even after we became adults. He was Dad, Uncle and loving friend to many first. I thank him for that and thank his children for sharing him with me.

My google reader share widget

There are some great disability blogs out there. A lot of them are on my google reader and I share posts a few times a day from new as well as more well known bloggers. Please check them out when you get a chance.

Today there are a number of creative and poignant posts on there. A short piece about two disabled people in a sheltered workshop by Fumbling Around in the Dark is one. Really find so many gems in our blogging community!

Prayer is also about listening for answers

Mark Kelly, Rep. Giffords' husband, speaks at the National Prayer Breakfast about the shooting, fate and the importance of prayer.

"Prayer isn't just asking," he says. "It's also about listening for answers..."

My prayers, and I'm sure my readers' prayers, are with Rep. Giffords and her family.

Fastest Hands Free Typist: Quad with TrackerPro and Swype Keyboard

See this article for more.

There's the sidewalk!

The stalwart snowplow guys just left. Today they snowplowed the sidewalk down to some cement for the first time in a month or so. Of course it's not wide enough for a wheelchair so I can't get around the yard. The snow is piled over three feet high out there. So the sidewalk looks like a tunnel.

We're in a 48 hour winter storm warning. Last night there was snow and today through tomorrows evening rush we're expecting ice storms and mix on top of it.

I mention all this because it becomes clearer to me the more the snow falls how little awareness people have what havoc a failure to properly clear snow causes for disabled folks. This is especially true in a winter when assuming the snow will melt in a few days is a fallacy. our ground here hasn't been clear since mid December and my mobility has become an expensive proposition requiring more assistance because of failure to shovel out accessible parking for six weeks by some places, failure to clear sidewalks requiring street travel, etc.

I'm seeing articles in the papers about this. A law student in Philadelphia spoke out about not being able to get to class due to poor cleaning of streets and sidewalks including curb cuts. People can't get to the doctors, grocery store and oh there's work. When it costs more to get to work than it pays and that goes on for weeks, I think we all need to revisit our ideas that we support the idea of people with disabilities working and being productive.

Really? Take a look -a hard look - at the width of sidewalks shoveled , the buried curb cuts and accessible parking spots. When we bury those paths of access for weeks on end, we bury a lot more than we may think at first glance .

[image description: a photo from inside a door with crossed wire boxes covering it, showing a narrow path through the snow]