Navigating the life that follows a spinal cord injury

Alli Lozoff writes about her uncle Bill, who lived with quadriplegia for over fifty years and was an artist- her fond memories of spending time with him and getting to know him. She mentions two young athletes in the area who recently acquired spinal cord injuries.

She speaks about friends who drifted away from Bill after his accident at a young age, even though some had his art work. I've seen this happen, far too often, in others' lives and in my own to some degree. Her words for the next generation at the end of this piece touched me and I wanted to share it here.


... I couldn't help wondering why they hadn't stayed in touch. It's remarkable that he touched their lives deeply; I only wish they had thought to touch his as time went by. Surviving accidents like this, and caring for those who have, can be a lonely, scary, infuriating experience.

No one can know who Bill would have become had he not been injured. The person he did become was funny, complicated, interesting and talented. I am still grieving his loss, and the multiple tragedies he endured, and the overall unfairness of his situation. But I am forever grateful that I knew and loved him, that I saw the world through his eyes on occasion, and that he may have served as a source of courage for others facing obstacles.

I hope the outpouring of support and interest in Jablonski and Privette continues, and that those who know them now continue to know them as time goes on.

Get Closer by Pro Infirmis

YouTube:

Pro Infirmis conducts an experiment: there are only a few people who don`t have empathy with disabled people. Nevertheless, the passenger seat in the public bus next to Fabian often stays empty. Handicapped people are a regular part of our society.

So, get closer.


via @lcarterlong

Siblings of people with disabilities

This 28 minute video from Attitude TV explores relationships between siblings and people with various disabilities.

Adaptive Sports: Who's Helping Who?

[cross-posted over at We Push Sports]

At the first wheelchair tennis tournament I went to years ago, I recall having a conversation with four or five other wheelchair users and one standing nondisabled volunteer.

The nondisabled standing person eventually sat down to join us. She told me later that she felt "left out" and was "missing what was said".

Over the course of the weekend, I began to notice how many of the nondisabled volunteers began to sit down in our empty wheelchairs (we brought two- a sports wheelchair and an everyday wheelchair) when they hung out with us. By Sunday, many of the volunteers were sacked out in someone's wheelchair part of the time and sometimes rolled around to retrieve items.

Other volunteers would sometimes tease them, saying "You can walk!" But, amidst the good-natured teasing, there was a real shift over the course of a few days about who was sitting where and how they were doing things. This carried over to moments when wheelchair athletes waited on volunteers who were too tired to go get something to eat.

"I'm sore," they would say.

"All that standing and walking," we'd reply, winking at each other. "Just not a good way to get around. Not very efficient."

Of course at the end of the weekend, the volunteers did stand up and walk to their cars. We rolled onto vans or loaded wheelchairs and transferred into our cars. I suppose, to the naked eye, it appeared that nothing had changed.

But I know better. Out of those experiences grew friendships and relationships - even marriages- that otherwise would never have been. People met whose paths wouldn't have crossed and the intersections between sometimes very different worlds became grayer and more permeable.

Volunteers told us about invisible disabilities they had. Over the years we watched as some went through family or health crises and began to wonder who was there to help who.

There was no clear answer to that question. It seems to me now, looking back on those experiences, that I learned that pretty quickly. The dyslexic teenager who was a ball kid for four years came to me and said helping out changed his life. "Whenever you miss a ball, you always say "Need more duct tape," he told me "And after I saw a quadriplegic play tennis, I figured I can get to college the same way. I just adapt."

We both smiled. Every now and then I get an email with just the words 'Duct Tape' from him.

So if anyone out there is hesitating about trying adaptive sports because you might need "help" - think again. Some volunteer just might need you to show up.

Christians with Disabilities

Introducing a new site called Christians with Disabilities for people with disabilities and those who love and care for them.

via its site:

Friendship, Encouragement, Compassion, Comfort, Understanding, Joy ~ That's what you'll find here. We can never replace relationships with Christians who understand our journey. Everyone will have different experiences and God will use every single one of those experiences to connect us all together.

The site includes groups, a member spotlight, events, blog posts, photos, videos, poems and other writings, video chat, daily devotions - and more.

Check it out.

What love has wrought

Gary Presley, the author of Seven Wheelchairs: A Life Beyond Polio, writes about meeting and marrying his wife in this piece. He candidly talks about issues of physical dependence, expectations and feeling as if he is "a chore, an obligation", as well as the day she brought him a ring and simply said "See if it fits". And he writes about what love has wrought.

Gary Presley's book can be purchased at Amazon.

Surprises happen

I woke up to a nice surprise. Some seeds blew over from an adjoining yard, leaving flowers growing on a patch of grass outside my window. It reminded me that surprises happen.

I had a few discouraging things happen this month with a group of people with whom I've invested a considerable amount of time trying to form a mutually supportive alliance. The problem is that, as time has gone by, there's very little effort - to none- on their part and more expected from me. As a result, a few situations have arisen that are unacceptable and needed to be addressed, with the result that those who don't want to do their part - a necessary component to having a mutually supportive alliance, by the way - have planted their feet even more firmly and stubbornly. It's a reactionary response to change - and sometimes even bringing up disabilty issues. I can't - and won't -invest my time, energy and effort into a group where it's a one way street.

I used to think, when these things happened, that I was "handling it wrong" or it "needed more time". Those are always possibilities, but I've found that in certain groups, the people are just not ready to see disability issues or a person with a disability as an equal. They lack respect. They come to the table with what in equity is called "unclean hands" - meaning they aren't willing to deal fairly. No negotiation. Their way or the highway. In groups where there's been eventual success, these attitudes certainly don't predominate and usually aren't tolerated, much less encouraged, by the group.

The highway can be a better alternative when you're seeking to form a workable, manageable alliance that is turning out to be one sided. As a result of experience, I've learned to spot when I'm wasting my time. I've also learned that I can, so to speak, shake the sand of some villages off of the tail end of my power chair and move on to another. There's much work to be done and yes, there are people who want to form alliances, rather than perpetuating old and unworkable attitudes toward disability.

Those flowers in the yard may have grown from happenstance, seeds that flew by, but the soil where they landed was receptive to growth. What a nice surprise to remind me to move on.

The people-I-used-to-know

I've noticed over the years that I now react very differently to something that happens in my life since I acquired my disability.

I'm talking about the flight reaction of people-I-used-to-know.

It happens when I run into old friends who don't know about my accident. As the years go by, I've seen every reaction from initial curiosity to a shrug of the shoulders, to running away.

Shortly after I acquired my disability, one used-to-be-best-friend visited me from out of state, told me that my disability was "pretty bad" , and cut off communications afterward. I was at a point where I'd worked very hard for the function and physical ability I had and really disagreed with her assessment. (An interesting aside here is how people reacted to the movie A Man and his Dog, where French star Jean-Paul Belmondo, after having a stroke, appeared in the film that showed a realistic portrayal of his disability. Poor ticket sales were, in part, explained by the fact that audiences wanted to remember him as he was.)

I used to feel quite upset when flight reactions happened. It felt sickening sometimes, as if I was no longer the person I was expected to be, as if I had somehow let these folks down.

Then I realized that I was internalizing their reaction. Their fears and assumptions about disability were overriding their ability to be present with me. They were running away from what they imagined, I suppose, was a ruined and doomed life.

They certainly weren't seeing me. And if they were more invested in remembering me as I was than who I am, I realized, that was about them, not me. This is who I am now.

My life is good. I work and have a full and productive life. I have friends. I'm busier than many able bodied people. And my ability to be happy is linked to my choices in life, just as it is for everyone else.

This is what the people-I-used-to-know would have found out if they hadn't run away.

Valentine's Day and relationships

On this Valentine's Day Wheelchair Dancer is writing about How We Are with each other in the disability community. She concludes:

How we are with each other alternates between a sense of community and state of fear. How are with each other depends a lot on what we do with internalized disability prejudice and our own fears for our wellbeing, access to resources, and place in this world. How we are with each other is a product of our generosity and grace. How we are with each other is how we treat each other, react to each other, and touch each other. How we are with each other depends on where we are with ourselves.

She really covers a lot of topics in her post that are worth considering - for all of us- in our relationships. And she touches on many issues that I've encountered, ranging from whether we relate to each other from fear or love, in a nutshell.

Feel free to go on over and join in the discussion. Happy Valentine's Day everyone.

Dating and Disability

Over at My Life as a Platypus, Goldie has written a wonderful post about her relationship with a friend she calls Todd, who used a wheelchair. Todd was her boyfriend in college and she writes candidly of her memories going out with him and running into access issues, as well as other aspects of their relationship. It's a great followup post to the 30 days segment, if anyone is interested in reading about relationships and disability from the point of view of a girlfriend/significant other. Here's an excerpt:

Todd and I met at the Special Olympics where we were both “Buddies” and were cheering on the athletes. I actually walked up to him and introduced myself because I had heard who he was through some mutual friends. We clicked immediately, (he liked that I was not intimidated by his chair) and had a date that same night. During that date I didn’t know how he did things and or if he needed help with anything so I just asked. He really appreciated that I felt comfortable asking but that I also didn’t assume he was helpless. Turns out he did NOT need any help.

Todd was an intelligent, kind, and strong man who was a lot of fun to be with. He also happened to be in a wheelchair. During our relationship we openly discussed our lives and the challenges we each faced… because we ALL face challenges in life.

...

We did a lot of normal couple things, and some more unusual things. I learned how to do wheelies using his extra chair, and we would have wheelchair races in his apartment. There were also some challenging situations. We once attended a formal event at a local restaurant and discovered there were steps but no ramp. I had to help him wheel up the steps backwards. This happened more often than you would expect. My arms got very strong that year. He would get upset because EVERY place open to the public should be accessible (we were in the country and they were still catching up), and when they were not it made him feel like a second-class citizen. He did not like to make scenes where he seemed different than everyone else.



To read the rest, go here.

Where's Emeril when I need him?

I love my friends, but none of them enjoy cooking. In fact, before I acquired my disability, I used to enjoy cooking for them. It wasn't unusual for me to invite folks over for a meal on the spur of a moment, and that goes back to when I was in college. My roommate and I used to always keep a pot of food on the stove, whether it was stew or soup.

Now my "cooking" is limited to pulling out the foil covered sandwiches and plates Meredith makes. On the weekends when my friends come over,   I've had to make it clear that the food my aide makes me is "off limits" because we plan my meals and grocery shopping, etc. so I can't "share" or give away those meals to people who drop by. 

What's developed is that a few friends 'grouse' about needing to deal with cooking. I've explained to them that I don't expect them to cook for me (especially if they don't enjoy it!) and so we often get takeout food. I thought this was a reasonable compromise until this past week, when I received a call from a friend telling me she was putting weight on because of eating takeout food when she visited. 

I pointed out that she picked out the kind of takeout food she brought over and could bring a salad or something healthier, to which she replied "I guess." Then I said "You know, if food's an issue, why not just come over to watch a movie and leave the meal out of the equation?"  I suppose for some folks, this might be the answer to the dilemma.

I had one sweetheart of a boyfriend who used to 'love' my Tyson ready made chicken, he said, even when he pulled it out of the packaging , microwaved it and put it on a plate with ready made macaroni salad. 

"Mmmm," he would say, savoring each bite. "This is actually very good, thanks."

I don't expect everyone else to humor me with this kind of thing. But I must admit, I loved him very much for it. And I miss him. 

  

Watching Notre Dame this year should count as penance

Sorry guys but it's true. I just watched a Notre Dame player try to catch a ball while he was looking at the field and then did a face plant. No one was near him, no one tripped him. Perhaps it was a shoe lace untied.

And yeah my bloggin' break is over.

Mostly because of Notre Dame. I'm sitting here watching the game and thinking about shoes. A Boston College player catches the ball and his shoe comes off and he manages to finish the play. Then he goes to the sideline and one of the coaches ties his shoe for him. I know because this is the kind of thing they show during a football game.

No one cares anything about my shoes and who ties them. Although it's not me. I tied my last shoe many years ago. I don't miss tying shoes. The only time I cared in the past decade that I couldn't tie my shoes was when my nephew asked me to tie his and I had to send him elsewhere. But now he can tie his own shoes too so that's no longer an issue.

Over the years I've watched lots of people tie my shoes. Everyone does it differently and no one ties my shoes the way I did. I never realized how many variations of shoe tying there are. And here's the funny thing: while people are tying my shoes, they talk to me about how they do it, most of them in a self deprecating way. "This is how I do it," almost all of them say, as if I'm grading them.

And I don't care. I just need my shoes tied.

At first this kind of talk made me uncomfortable, as did the whole idea of needing someone to tie my shoes. But now I find it interesting, as if I'm adding data to my study entitled "Third person shoe tying". I think, after my empirical studies, that people act this way because when they were learning to tie shoes, most of them were told how to do it and treated by their parents as if the way they did it didn't quite measure up, so they wound up feeling as if they never quite got shoe tying down right.

Why else does everyone apologize for how they do it? "I'm sorry, I tie it (tighter, looser, bigger, smaller) than most," is all I hear. "I know I'm doing this wrong." In my book if you tie a shoe and it stays tied for longer than eight or ten hours I'd say you've done just fine.

Such a simple act. Yet apparently it reflects a lot about us.

And then there's the Notre Dame receiver. I really don't think he tripped over an untie shoe lace. But if he did, that's one other reason for him to feel bad about himself. He'll think "I can't even tie my shoes right!" So I'm glad the Boston College player's shoe fell off.

Just like when people apologize to someone who can't tie her own shoes about how they do it, It kind of levels the playing field, don't you think?

Deaf judge composes music for Pope

An Australian judge has written music to be used at the World Youth Day services.

"The Sydney Morning Herald reports that the mass is titled Benedictus qui venit. It's from the Latin liturgy "Blessed is He who comes in the name of the Lord", in honour of the visiting Pope Benedict.

Justice Palmer said: "This is a youth Mass, but it has to be suitable for everyday Sunday use, so it has to be happy, uplifting and full of energy."

Justice Palmer is a judge in the equity division of the NSW Supreme Court. He has written classical music for his own pleasure for many years. "

Via cathnews.com

Disability and Privacy

An essay over at A Different Light

Keep the Pity

A hat tip goes to The Gimp Parade for the link above. The post comes from Gordon over at Gordon's D-Zone who writes about his childhood experience as a kid with a disability when an able bodied friend was given an award in a local paper for, well, being his friend. He writes:

"I suddenly felt inferior and felt betrayed by my teachers, my schools and all the institutions that supported this prize. Sadly, this prize goes on every year and guess what? Non-disabled boys and girls still receive this prize for ‘being friends’ to their disabled ‘less fortunate’ friends.

Whilst I don’t want to doubt the intentions of the children awarded this prize, I feel that this prize still sends across a message that disabled people are less worthy and if someone should befriend them it’s not because that particular disabled boy or girl has something to offer in a friendship but because the non-disabled boy/girl is indeed ‘generous’ and ‘kind’ for being with these children."

This scenario is not limited to childhood. When people offer friendship or "companionship" out of pity, the signals are clear. There is a sense of "sacrifice" about it that often resembles the long suffering stance of a martyr in a hair shirt. I've seen this many times in volunteer programs where well meaning but misguided volunteers never get over the "pity" factor in their approach with the "less fortunate".

And the sad part of this is it happens due to assumptions. Some people fail to realize that the same rules of relationships apply in a possible friendship with a person with a disability. You have to get to know the person first and see if you want to be his/her friend.

When pity comes up, it places a roadblock in the way. It starts off with the assumption that there will not be any real friendship/relationship with the disabled person like, well, other people because they are, well, different. So instead of getting to know the person and being genuine and authentic about it, "being with" the person is reduced to something akin to community service. It precludes being in a relationship together.

How could that approach not be easy to spot? Of course, what Gordon writes about is a bit different. Two children free of those constraints had a friendship tainted by the assumption that the able bodied kid was friends with Gordon out of pity.

How sad. Because they were probably just having fun together.

The Naysayers

An essay over at A Different Light. Click above to read it.

Being real - from the first date through marriage

In this radio interview at Revive Our Hearts, Joni Eareckson Tada*, a quadriplegic, talks about her marriage to her husband Ken, from their first date to the present. She recalls how she was so nervous their first time out at a restaurant that she drank too much water and it filled up her leg bag - so she needed Ken to help her empty it out. Neither wanted to crash into the opposite sex's rest room - so she "watered a bush" outside and emptied the bag there. She recalls how that sense of being real with each other was key and has been key in their marriage.

She also acknowledges the ways she and Ken work out getting their needs met in their marriage. They each have different sources of support and, at times, different friends and outings supplement their lives and help their marriage.

Click above to read the entire interview.

*Joni Eareckson Tada is a world reknown speaker, writer and heads a disability ministry called Joni and Friends.

Disability and suicide: A tribute

Don't kill the dream - execute it ~
Unknown

I learned early on in my young adult life that I could spend my energy trying to make things happen that I believed in - or making a choice to let opportunities go by. I also learned that when I let opportunities go by, I never felt very good about myself.

Sometimes living this way was a burden I didn't want. I watched as other friends partied while I went on to get more education. Then I took low paying jobs and volunteer positions because I knew that was part of executing my dreams. My adventures took me places and introduced me to all kinds of people. All of them, I began to realize, were special human beings. Each person I met, no matter what his or her circumstances, whether they were in an institution, lived in a mansion or a city housing project - had more in common than not by virtue of their humanity.

I was baffled at the extremes I saw - not just the poverty versus the wealth, but the great despair neglect wrought in some people, no matter what their material circumstances were while others had such hope. Eventually I learned not to feel intimidated by someone's wealth and I learned not to assume that someone's poverty meant their life was not a full one. I learned to see past their circumstances to the person.

I learned that if someone did not feel loved, nothing else mattered.

Several years ago, a friend of mine with a disability killed himself. He had money, a good job and fairly good health. But he thought he had no one who cared about him. He was a generous, funny guy who is missed by everyone. He was a special human being who became, in his mind, a throwaway. He lost his caregiver and his family member died. In a tragic act of desperation, he took his own life.

I'm posting this in his memory. If anyone reads this and remembers to reach out to one other person who needs to feel connected, it's been worth writing.

And if by any chance *you* are feeling like a throwaway, please reach out for help. I wish someone had said this to my friend : You are a special unique person who is lovable. There is no problem that supercedes your worth as a human being.

If you've lost material wealth, you can find spiritual wealth in the meantime. If you've lost your health, you can use it as an opportunity to philosophize about life. If you've lost friends and family, you can build a bigger community than you ever imagined.

Don't kill your dreams - live them out.

RIP HG

NATIONAL SUICIDE HOTLINE
1-800-SUICIDE

Disability blog carnival

Go check it out - disability and relationships is the topic!

"He's blind - I married him anyway"

Via Planet of the Blind, Connie writes this excellent post dealing with erroneous assumptions made by some folks about a relationship with a person with a disability.