Disability Participation Can Be Boring

Today we have another guest post from Carl Thompson who writes the blog Working at Perfect. I first got chatting with Carl after he commented on the Weddings and Wheelchairs blog post, agreeing that it's great to see images of people with disability doing "normal" things. This post has kept me thinking on that point... Enjoy!

Carl Thompson

 

This post is about the concept of participation, and I am writing it for February's Disability Blog Carnival, held on the 25th. In its simplest form, participation means undertaking activities, often with others. This isn't an English lesson though, so instead I want to talk about what participation means for me in the context of my disability.

This is an extremely important topic for people with disabilities, as all too often doctors, physiotherapists, occupational therapists and the media focus far more attention on what we can't participate in or do, as opposed to what we can. On the rare occasions where people with disabilities are portrayed in the media, it is almost always an inspirational story telling of someone rising to the insurmountable challenges they face, or overcoming great adversity - you know the stuff, the brave disabled doctor with six PhD’s, or the mountain climber with no arms who has scaled Everest solo.

So this is going to be a bit of a letdown, but what I participate in is pretty boring. Maybe boring is not quite the correct term, but definitely nothing out of the ordinary. I go to work, come home and sit at the computer for far too long. I also eat and drink, occasionally in places outside my own home! I have friends, they visit me and I visit them. We talk about movies and TV shows. Get drunk, play games and drink coffee.

 

Are you bored yet? I know I am, but I'm trying to prove a point. People with disabilities can be amazing, and can participate in activities which most people would think were impossible. But these utterly interesting people, like everyone else in the world, are the exception and not the rule.

Unfortunately, in addition to the pedestal that disabled people are often placed upon with regards to achieving amazing things, the opposite is also true. For instance, many people are amazed that I have a bachelor degree from University. Others are also genuinely impressed that I go to work, and shock horror, that I actually get paid for it! This is a revelation to these people, as they finally realise that I'm not a token disabled volunteer, and that I actually like money and higher education.

Why do people think this about disabled people? Is it really that amazing? What about the tens of thousands of able-bodied people who earn their degrees every year? Or the millions of Australians who work every day? What I'm saying is that many people mistakenly perceive my participation in everyday activities to be something out of the ordinary, when really, there isn't all that much people my age participate in other than going to university, drinking beer and starting work.

I'm not an inspiration - I'm not a prodigy, a miracle, or a Paralympian. I'm just a dude who rants on the Internet who happens to be disabled.

 

I want to know what love is? I want you to show me...

Today is Valentine's Day, and Rich Fabend has written a very timely guest post about lasting love (not just chocolates and flowers!) For those who think the title of this post sounds familiar, they're from a song by Foreiger. Enjoy!

Rich Fabend

Since Valentine’s Day is Monday I will give you an example of what love is because I can’t show you. My wife Marge and I have been married 45 years.  At my son’s wedding I was asked to give a brief talk. The following quote was part of what I said: “The last 29 years have been the best of my life. Marge and I have shared laughter and tears, good times and bad, joys and sorrows; but more then that, we have shared our dreams, our inner most thoughts, our strengths, our frailties, and we have shared our love. Marge has always been there when I have needed support.  Things that happen to me when we are apart are not complete until I share them with her. Only with Marge can I truly be myself and completely relax.”

Less then 5 years later I had my accident. The accident did not just happen to me, it happened to my family but since we had an “empty nest” it was really Marge who had to shoulder the majority of the responsibilities. The readjustment was greater than we ever anticipated. It took a long time. I like to tell people that our dog realized in a few weeks what it took me years to figure out and that was that Marge was now the alpha member of the family. Many couples, unfortunately, do not survive the consequences of a readjustment of this magnitude. We were very fortunate to head into it with a strong relationship built up over 35 years. More often than not people tend to focus on me and the challenges that I have had to deal with. I think many give little thought to the tremendous responsibilities placed on the spouse. My wife epitomizes the wedding vows and lives up to Tammy Wynette’s call to “Stand By Your Man”. Marge, not only cooks and manages our home, she also oversees all my care issues, chauffeurs me everywhere I have to go and puts me to bed every night. I owe my good health and lack of complications to Marge’s supervising my care.

The hardest part of my adjustment is having to watch Marge deal with the physical tasks that have been thrust on her. Yesterday and today February 10 and 11 we received several feet of snow (check the roof of the dog house in the picture). We have a wonderful neighbor who keeps our driveway plowed and open. But there is still a lot of physical work she must do like shoveling the front walk and bringing in firewood. There are also activities she chooses to do like feeding the birds. After my accident we decided that the birds would be a wonderful source of entertainment for both of us. I have built some bird feeders and we have feeding stations all around our house. The snow from the storm is waist deep so movement off paths is extremely difficult. Both yesterday and today I had to watch Marge shovel her way across the lawn, pulling a sled full of birdfeed behind her. She had to shovel in several different places to reach all the feeders. She returned to the house tired from her struggles. Why does she do it? After all it is not necessary; the birds would survive anyway. Marge struggles to feed the birds because she loves them and because she loves me. So Foreigner that’s only one small example of what love is!

P.S. If you know Marge please don’t mention this blog to her because she doesn’t want me to write about her.

Empowerment : The Process

This week Rich Fabend emailed me with another guest post and the comment that he seems to be into writing about empowerment as a bit of a "theme" lately. This post is very thought provoking and I don't think you can ever have too much discussion of empowerment. Thanks Rich!

Rich Fabend 

To be a member of the disabled community does not and should not imply we all have the same physical and mental challenges nor do we share the same needs for help and assistance. However, I also feel very strongly that there are certain attributes which can be cultivated which can make living with a disability easier.   

When I came home from the rehabilitation hospital and my physical health improved I became desperate to regain some control over my life. In addition to the physical results of my accident I was dealing with tremendous mental anxiety which left me frightened to be alone, afraid of the dark, fearful of the unknown and scared to be in certain places or positions. I started having night terrors and was anxious over my inability to exercise any control over my environment. Prior to my accident I prided myself on the control I had. Having been a licensed New York State Guide for over 23 years, I had taken many trips into the wilderness. I enjoyed the fact I was self-reliant and ready to handle any situation Mother Nature might place me in. 

 Tripping in Canada

As my health began to improve I knew I had to gain more control over my environment. This was the beginning of what I now call learned empowerment. I was fortunate to have a determination that helped me face challenges head on. I believe attitude is the critical ingredient for empowerment and important in the early stages of recovery but less so after time. With quadriplegia, initially you seem to be at the mercy of everything and everyone. Little or nothing seems within your control. It became vital for me to regain control of some things regardless of the price that had to be paid. The demons came out at night so that’s where I began.  Small things at first such as leaving a light on at night, having an MP3 player next to the bed (which I could only turn on using my teeth), an oversized remote for the TV available, a pill box with Xanax within reach and a bed control clipped on my shirt which allowed me to raise myself in bed.  As I was able to regain my control in a few areas, I began to realize I could do it in other situations as well. And so began my empowerment. As my ability to exercise control improved, it seemed to become less important because I realized I could do other tasks if necessary.

However, this learning process took years. It was extremely difficult for those around me. They had to be passive observers while the one they loved struggled to master a task. I can remember my wife sitting on the edge of the bed while I attempted to take off my shirt to get ready for bed. Initially it took well over an hour. Imagine the strength and love it took for her to watch me struggle without interfering. The restraint she showed is a great example of when doing nothing is really doing something. I’m sure it went against all her nurturing instincts. Nothing in this new life comes without hard work, frustration, failure, modifications and persistence.

This entire process begs the question what can those of us who have dealt with these issues do for the individuals who join our disabled community every day. What assistance and support can we provide both to help these individuals to minimize adjustment time, ease frustration and regain more control of their daily lives?

The Dating Game

Happy Monday everyone! I can't believe it's the end of January already. No doubt the supermarkets are already getting filled up with Easter eggs (not that I'm complaining, I LOOOOOOOVE Cadbury Creme Eggs, LOOOOOOOOOVE them.) Anyway, today I have another guest post for you written by Leonie Hazelton. This post was inspired by recent media reports of dating websites specifically for people with disability.

Leonie Hazelton

 There are loads of dating sites on the ‘net at the moment claiming they can find love for everyone.  There are even sites specifically for people with disability claiming they can match people with disability with other “like” people with disability.  I’m not really sure if I’m a fan of stuff like that, because if we’re all into inclusivity, I don’t think launching dating sites specifically for one group whose wants and desires are no different from people without disability is necessarily moving forward.

While I appreciate that it’s safer to date or look for a potential match with someone with a similar disability or condition to you, I don’t think it’s necessarily productive.  What if you don’t find someone?  It has nothing to do with your disability, only the fact that you have different attractions and interests to other people on the site.  Also, what about us antipodeans?  Most of these dating and disability sites are US based so it is difficult for us to find a mate with a similar disability to us, let alone being on the same side of the globe as us.

I had a quick look at one of these said sites and A) discovered that there are Australians and B) they’re pretty forward about (in the site’s words) their “Challenges.” 

I’m still not sure if I like the idea of specifically disability dating, which brings up the question of disclosure.  “When do I tell him/her that I have XYZ disability/condition?” 

I really do appreciate that we want someone who understands our needs/wants/desires, but I honestly think that we should not be restricted to one particular group in society.  I personally believe that we can educate in all areas of our life.  If that means going out on a date with a person without disability and showing them that “Yes we want “it” too” than that’s a way we can teach others.  If on the other hand, a person rejects you outright because of your disability, maybe it should just be chalked up as not being worth it because the person’s not going to respect/want you anyway regardless.  If someone really wants you, it should be with no strings attached, end of chat.  Also isn’t dating about taking chances and risks?  You may get hurt, sure but that’s the way dating is, disability or no disability. 

I’m interested to know what others out there in blogland think.  Do you think you can start an account on a mainstream dating site and disclose later or is it safer to do the disability dating site thing where there’s a field in the profile stating what disability you have so it’s out there from the beginning?