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.

 

Benedict Cutler Clothing Solutions

Today I'm able to post a really interesting story about two Australian entrepreneurs Ben Cutler and Zane Conroy, and their new business Benedict Cutler Clothing Solutions. It's great to see people observe a problem, in this case a lack of appropriate business and formal clothing for people who use wheelchairs, and find a creative solution that will benefit many people.

Zane Conroy and Ben Cutler

When Zane Conroy acquired a spinal cord injury in January 2010 leaving him with quadriplegia he set himself a goal, to return to work by September that year and get on with life. Just before he left the Royal Rehabilitation Centre in Ryde he met Ben Cutler who was to be one of his support workers helping him with this goal and day to day activities. 

In September when it came time for Zane to return to his office job in Sydney’s CBD he was disappointed to find that the suit he once wore with pride to his job and on formal occasions did not fit in all the wrong places and he was left feeling distressed. “I honestly felt very uncomfortable and even claustrophobic, no matter how I directed my carer to move or adjust the suit, it was choking and too loose at the same time. Not something I could see myself going to work in every day” said Zane.

“I had met Zane only recently but quickly realized he was about as strong willed as they come and so the look of disappointment on his face when his clothes were all frumpy and ill fitting moved me to make some enquires” explained Ben. 

Having looked extensively online at available options Ben quickly got in contact with his Uncle John of J.H Cutler bespoke Tailors to see what they could do to help. “Uncle John had fitted some clients who used wheelchairs before and was happy to help alter Zane’s suit so that it looked and fitted as one should”. The alterations were a great success and even incorporated hidden zippers for easy access to personal care equipment, but most importantly they fit well whilst not restricting movement and avoiding pressure areas.  After some more enquires into other clothing options, or lack of, Ben has decided, with Zane and in consultation with J. H. Cutler bespoke, to put together a clothing line consisting of not only formal wear but also casual trousers, jeans and jackets. 

Launching in April, Benedict Cutler Clothing Solutions will be offering both a personalised and online service to restore clothing and fashion options to those who happen to use wheelchairs and feel that this should not inhibit ones ability to look and feel good in what they wear both to work and in social situations. You can find out more by visiting www.benedictcutler.com.au .

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.

Tips for Planning a Fabulous (Accessible) Holiday

 

(Image courtesy of http://topbillinmusic.com/)

Today's post is a contribution from Jason Ballerini, who has previously posted his story on DisCo. Jason is a keen traveller and recently took a trip to Bali. Here are some of his general and flying tips for travel from his personal experience as a wheelchair user. 

Jason Ballerini

Tips for Planning a Fabulous (Accessible) Holiday

General Tips: 

1. Plan ahead and book early. Accessible resources are limited, so if you require a wheelchair accessible cabin or hotel room, make reservations early to avoid
   disappointment - several months in advance if possible.
2. When making any type of reservation, whether it be for a hotel, medical
   equipment, a van, or an attraction, ask VERY SPECIFIC questions. Don't let someone get away with answering you with a quick "yes, we are wheelchair accessible,"
   because a lot of times they really aren't. Let them know exactly what requirements you are looking for and make sure that the reservations agent understands what you mean.
3. Always check and double check reservations. Nothing is more frustrating than thinking you have a reservation for something when you don’t.

 Before You Go:

1. When booking a flight, be very specific about your situation and the requirements you need i.e. an aisle seat, bulkhead seats, seats beside each other, what type of wheelchair you use (manual or electric, wet cell or dry cell batteries), and whether you will need assistance boarding the plane.
2. If you have a choice between a direct, non-stop flight and a slightly cheaper flight that has connections, take the non-stop flight. You may save a little money by choosing the connecting flights, but the money you save often isn't worth the hassle of having to change planes and the potential problems that go along with it. Changing planes means that the baggage handlers have to handle your wheelchair one more time, and unlike the first leg of your trip where you can show the people who take your chair how they should handle it, you can't give any instructions to the next handlers. There is also more possibility of luggage being lost temporarily if you have to change planes. Connecting flights can also cause issues if for instance, your first flight is a couple hours late departing, you may miss your connecting flight. 
3. Have your wheelchair or scooter routinely serviced before you go so that you are sure everything is in working order for the trip. Bring some extra wheelchair or scooter parts (such as tyre tubes) along on your trip in case you run into trouble during your travels. It is also a good idea to bring some basic tools (screwdriver, allen keys, duct tape, etc.) along in your checked
   baggage in case you need to do a little repair work on your chair at your destination. 
4. If there are sensitive or delicate areas on your wheelchair that you will not be able to remove and take with you into the cabin of the plane, put labels on these areas so that the baggage handlers know not to touch or remove them. For instance, label the brakes with a big piece of tape, including up and down arrows indicating which way the brakes go to engage or disengage the chair to assist the handlers.
5. Check and double check your reservations i.e. seats beside each other, aisle seat, aisle chair etc.

 At The Airport:

1. When you are checking in for your boarding passes and they are tagging your luggage and wheelchair(s), ask them to "gate-check" the wheelchair you are sitting in. Then they will put a tag on your wheelchair that tells the baggage handlers at your destination to immediately bring your wheelchair to the gate (the door of the plane) rather than bringing it to the baggage claim. This way you can immediately transfer back into your wheelchair outside the door of the plane at your destination rather than having to sit in an airport wheelchair first, and be pushed to the baggage claim by an airport official to meet up with your chair. Note that it is not guaranteed that they will be able to bring your wheelchair back to the gate at your destination as it depends on whether or not there is an elevator nearby to bring the wheelchair up from the cargo hold. If not, they automatically just bring it to the baggage claim.
2. When the check-in agents are tagging your luggage, a lot of agents like to tag the checked luggage of a person with a disability with priority stickers so that they are the first bags off of the airplane and therefore the first bags on the baggage carousel. However, people who need wheelchair assistance are always the last ones off of the airplane, so, if you see the checks-in agents putting priority stickers on your checked baggage, you might just want to tell them that it's not necessary (unless of course you would like it).
3.  Immediately after you transfer out of your wheelchair (and before they take it away), remove any loose or vulnerable parts from your wheelchair and take them onto the plane with you. Baggage handlers are notorious for manhandling wheelchairs. They love to take apart anything they can, so it is important to remove loose parts of your chair and just store them with you on the plane. This includes things like a joystick and footrests. You don't have to put them in your carry-on luggage - just place them in the overhead compartment above your seat.
4. Secure any loose or moveable parts on your wheelchair that you can not take on the plane with you before they take your chair away to the cargo hold. For instance, if you are checking an electric wheelchair that has a swing-away joystick (or some other moveable part), tape it together so that it is secure and unable to swing out or move.
5. For those using electric wheelchairs, take the batteries out of your wheelchair personally at the airport. If your batteries do not come out of your chair, make sure you disconnect them and show the airport handler who will be taking your chair away that they are disconnected. 

 In flight:

1. Using the bathroom. No matter what the airlines tell you, bathrooms on board airplanes are not very accessible - especially for someone who might require assistance from a caregiver. They are incredibly small and can really only fit one person. You may find it helpful to firstly plan what you eat and drink that day so that you have less need or do not have to use the bathroom during the flight. If you think it is inevitable that you will need to use the bathroom at some point, try at the very least to use the bathroom inside the airport just before you board the plane so that you have less need to use the one on the plane during the flight. The bathroom in the airport will be bigger and far easier to use than the one on the plane. If you do have to use the bathroom on the plane during the flight, it should not be a problem for most airlines. The general practice is that the flight attendant will bring the onboard wheelchair to your seat and help you wheel to the bathroom, although if you require help inside the bathroom and transferring into the chair, you must provide your own caregiver to assist you for that. If you think you may have to use the bathroom on the plane during the flight, make sure to follow up with the airline at the time of reservation and again a few days prior to the flight to clarify their policy and ensure that they will have an onboard wheelchair on your flight.         

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?