Friday, April 30, 2010

The Traveller - Diana Palmer

The feature of my day has been catching up with our international informative, Diana Palmers. She has been regularly sending her blog posts my way and it is again interesting to see that she is finding alot of similarities and also differences between Australia's disability services and services from overseas.

I am looking forward to recieving the feedback and information she has about how disability information can grow in Australia. The places she has visited are plentiful and fabulous (and yes I am very jealous). So far she has visited:
  • San Francisco
  • New York
  • Texas
  • Phoenix
  • Montreal
Check out one of her recent blog posts:

Keroul - Wednesday 28th April

Back to work....I spent the day with Andre leCLerc and his team at Keroul in Montreal today. What a great day. This organisation is doing a number of the things that we can see IDEAS doing....we can learn a lot from them. Keroul have specialised in supporting accessible tourism for people with disability in Quebec for 30 years and have a wealth of experience and knowledge. I spent time with the executive team, Research and Development team as well as peopel working on their Äccessible Road project. The dedicated staff of 8 people were wonderful hosts and I can't thank them enough for their time. I came away from the day armed with a mountain of papers, reports and tools to research and review as well as a genuine hockey puck. Great ambassadors for Quebec; it was so nice to connect with colleagues in our field.I will meet again with people from Keroul at the Transed Conference in Hong Kong. If you would like to see what they do visit either if you would like to see what they do or which is another of their websites.

I am looking forward to finding out more about her travels and will keep you informed of her movements. There are a lot of nice photos up on her blog, so check them out!

Tuesday, April 27, 2010

Time to Walk the Walk

Rich Fabend

In my previous three blogs I have encouraged individuals with disabilities to change their attitude, be willing to take some risks and begin to try some different ways to make their lives a little easier. I talked the talk but now it is time for me to walk the walk and show you some things that I’ve done to adapt equipment for my use. Below is a materials list of items that will be helpful to have around for making adjustments to things you use.

Cable ties, Clamps, Clips, Compression bandage, Duct tape, Friction tape, Foam, Hose Clamps, Pipe Insulation, PVC Pipe, Straps and Webbing, String and Shoelaces, Velcro, Wooden Dowels.

My hands are normally in a loose grip position. It is almost impossible for me to grip anything tightly. In order to hold on tight my hands must be strapped on to the object. I noticed lacrosse and hockey players wrap tape repeatedly around the same spot on their sticks to prevent their hands from sliding off the stick, so I decided to try it. If you look at the attached video (Adapting a Broom) you will see how I use friction tape and a piece of wooden dowel to enable me to use a broom. The friction tape has been used to make what I call a “stop.” On a long handle, such as a broom or rake, you should decide where you want your lower hand positioned and place the “stop” right there. Wrap tape repeatedly around the same spot until you have built up a raised area on the handle. Grip the broom or rake as best you can. When your hand slides up the handle it will come to rest against the “stop” and prevent any further upward movement.
The turning of the tool in my hands frustrates me to no end. I have used several different adaptions to help me control them. A rake or broom is of little use if it turns over when one goes to use it. In order to stop the roll over I drill a hole in the end of the handle, if there is not already one, and insert a piece of dowel, round pieces of wood of varying diameters. A piece of tape on either side of the shaft will hold the dowel in place or I attach the dowel through the hole using a rubber band. This enables my wife to remove the dowel if it gets in her way. In the picture I am loading the wheelbarrow with straw I have raked by turning the rake over and sliding it under the straw. Holding on to the dowel prevents the rake from rolling over.

We have a wire wreath-like birdfeeder which is filled with peanuts. We then hang the wreath outside for Blue Jays and other birds. They will pull the peanuts out one by one. As you can see in the video, the kitchen floor is quite a mess when I finish. So I use the broom I have adapted to clean up. Use this technique on other long handled tools like a mop, leaf rake and other garden tools.

Wednesday, April 21, 2010

The Traveller - Diana Palmer

I have been watching the movements of our keen disability information traveller, Diana Palmer, on her recent expedition to
  • USA,
  • Canada,
  • the UK,
  • Blegium,
  • Czech Republic,
  • Sweden and
  • China.
The aim of the tremendous journey: to investigate provision of accessible and relevant information enabling people with disability to make informed travel choices.

I invite you to explore and discover along her journeys by reading it here on the DisCo blog. Diana does have her own blog and you can follow her findings there. Here's an introduction to what she has discovered:

San Francisco- tuesday April 13th

Yesterday I had a conversation with Scott Rains which was very informative. He is a fellow to keep in touch with and one who has a good understanding of what is happening at the moment in the accessible travel field. He is a very good networker and has names at the tip of his tongue, which has been of great assistance for me in planning the UK leg of this trip. His experience and knowledge of the different operators, experts and opportunities in the field are very valuable. The time spent with him was worthwhile indeed. I hope to be in touch with him again in the near future.

Today I met with Bonnie Lewkowicz from Access Northern California to discuss her experiences. Bonnie is leading activist and a great advocate for people with disability. Bonnie leads a small no profit which has developed access guides for the Northern California region as well as the San Francisco access guide. This was a nice introduction into the workings of the disability advocacy sector in the USA. Bonnie has a good handle on how things work and where things are at. We discussed the issues of maintaining information, its accuracy and reliability. My conversation with Bonnie was the first to see how similar the issues are in the US to those we have at home. The problems of collecting accurate information and maintaining it – the resources needed and the funding for it I don’t think are any different to our experiences in Australia.

For those after some travelogue information – the weather ahs been cold and wet, the tourist sites being visited are the iconic sites and information is being collected on the accessibility of these sites for future use by IDEAS NSW.

Now on to New York…

Friday, April 16, 2010

Introducing Guest Blogger Paula Apodaca

I have taken a shining to the words of this magnificent woman. She has Epilepsy and is open to sharing her experiences, the questions that co-exist with the experience and her many achievements. She writes her own blog 'E. is for Epilepsy by Paula Apodaca' and is able to manipulate the english language to create a signature of understanding and motivation!

Paula Apodaca

In the late 1970's, Peter Conrad and Joseph Schneider were in the field, researching the experience of epilepsy. They concentrated their search for informants on the middle states and were rewarded with an overall participant pool of about 80 persons willing to talk about their lives with epilepsy. Having Epilepsy: The Experience and Control of Illness published in 1983 and the authors were heralded for their work.

When I read the book, some 20 years later, I was surprised by the singular nature of this work: Epilepsy is a disorder much written of and endlessly researched from medical, surgical, and pharmacological points of view, but rarely from a sociological stand point. For me, the book was a real page-turner. Yet, even as much as I liked the work, it seemed to me that it missed something essential: a discussion of key issues unique to the experience of "E." (epilepsy). That's what this blog is for, to talk about some of those key issues that create the essence of one's experience with E..

So, let's talk about them. But first, let's define our terms---after all, we have to agree on the language we will use if we are to understand each other clearly. I have over 50 years experience with E., and it should come in handy. Let me tell you how I realized the way the naming of epilepsy was setting up a barrier to any effective or meaningful dialogue about E.: As a child, it was carefully explained to me by my mother and my first few doctors that I had epilepsy, that I experienced grand mal and petit mal seizures, and that I wold never get over it. In my teens, I learned that I had left temporal lobe epilepsy that expressed itself as both grand mal and petit mal seizures but I was fortunate because my seizure activity came with an aura. As a young woman I was informed that all of this was wrong: what I had was epilepsy, certainly, but it had a left temporal lobe focus, and I suffered grand mal with an aura, petit mal and psychomotor seizure activity.

Today, I have simple and complex partial seizures which secondarily generalize into tonic-clonic episodes, accompanied by psychomotor episodic events. Over the span of my lifetime, my diagnosis has never changed, but the language used to describe it has.

Conrad and Schneider refer to a modernization of terms for epilepsy at the beginning of their book. They point out that some sets of terms are older than others. I feel compelled to point out that just since the publication of their book in 1983, the august body in charge of creating the lexicon used to describe epilepsy has ratified changes at least twice more and is likely to do so again, as soon as this year. As I count it, that makes at least four changes to the language used to name and describe epilepsy in less than 30 years.

Who are these folks? They are the International League Against Epilepsy. To be fair, this active phase of taxonomic refinement is a reflection of the outcomes of research and knowledge growth from within the medical community. But while changes to the language serve and enrich communications between clinicians and researchers, it has a paradoxical effect on those who live with E. because it enhances our sense of isolation from everyone else. After all, how do you begin to talk about your disorder if you can't simply use terms readily accessible to ordinary, non-medicalized folks?

Well, perhaps those kind of conversations can wait. The first set of conversations a person with E. can expect to have will be with one's doctors. You think: This should be easy. After all, E. is an ancient, well-recognized disorder, written about for thousands of years, diagnosed by Hippocrates the Greek and later by Galen the Roman. Not to mention it's New Testament references. So, it is reasonable to expect a clear, easy-going conversation from one's physician. True?
Not true. In fact, most persons experienced with E. have a broader working knowledge of this disorder than do many doctors, regardless whether they are generalists or specialists.

But, here's a tip offered by many of us experienced with E.: if you have an appointment with a doctor and you use words he doesn't seem to understand, or if he uses terms you recognize from before the 1970's, he is probably not the doctor for you. His use of diagnostic terms can tell you how seriously he takes E., how well he will treat you as a patient, and whether or not he has kept abreast of current treatments.

Tuesday, April 13, 2010

Dealing with Risk

Rich Fabend

If you read my other two blog entries Attitude, Attitude, Attitude and Attitude Adjustment, hopefully you are beginning to understand that it is a combination of your attitude and an ongoing process that are necessary to begin to deal with some of your daily frustrations. There is another barrier to some people’s efforts to think beyond traditional methods of accomplishing an objective. That obstacle is the concept of failure. Dealing with life's adversities often involves risk and along with risk comes the idea of success or failure. We are often reluctant to take a risk for fear we may not be able to accomplish what we are trying to do and that implies failure. First of all, nobody always achieves what they set out to do. Secondly, many individuals have the misconception that failure is bad. However, failure if approached with a positive attitude, provides opportunity for learning and hence for growth. In a “60 Minutes” interview LeBron James, the famous NBA basketball player, was asked what advice he would give to young kids, his response was not to be afraid to fail. LeBron James said, “Don’t be afraid of failure".

Making adaptive equipment often involves a learning process that includes a change in attitude. If you have an idea for creating a piece of adaptive equipment, pursue it. Remember for all of us, thinking out of the box is a strategy that can lead us down the road to success. When making adaptive equipment try to keep things simple. Use materials that are readily available and make the tools multifunctional if possible. Do not let yourself become discouraged for very few things happen quickly. Learning to approach a task with a new outlook will take time. However, success breeds success and after awhile you will look at things differently. Look at a new situation not as a problem, but as a challenge needing to be addressed. Set your mind free of the cultural restraints which may prevent you from finding a solution. The following poem hung on the wall in my classroom for years.


Author Unknown

To laugh is to risk appearing the fool.

To weep is to risk appearing sentimental.

To reach for another is to risk involvement.

To expose your ideas, your dreams, before a crowd is to risk their loss.

To love is to risk not being loved in return.

To live is to risk dying.

To believe is to risk despair.

To try is to risk failure.

But risks must be taken, because the greatest hazard in life is to risk nothing.

The people who risk nothing, do nothing, have nothing, are nothing.

They may avoid suffering and sorrow, but they cannot learn, feel, change, grow, love, live.

Chained by their attitudes they are slaves; they have forfeited their freedom.

Only a person who risks is free.

~ from page 147 of the book "Addiction by Prescription" by Joan Gadsby

Monday, April 12, 2010

Leaving your mark on DISABILITY

The value of volunteers can not be measured in words. Volunteers play a vital and much valued role in the disability sector. In fact, a lot of the programs that function to assist people with disability, their carers and older people; involve the gracious and hard work of a volunteer.
Volunteering in the disability sector is a way to effect positive change; through the sacrifice of time you are given the opportunity to undertake a labour of love. And the rewards given from these experiences are ever lasting; they are carried on the very footsteps that you take through life's journey. Becoming a volunteer is a very selfless act, and an act that often fills a small empty space the heart of others, although small this space is permanent.
I have volunteered for numerous organisations, using my skills to assist in the ways that I thought were best for me. In some ways I felt a certain grain of selfishness in the positive emotive outcome of my experiences. I also gained an irreversible change in myself, as my life took new directions with new possibilities.

You may volunteer in the disability and aged sector in any manner, whether it be as a carer, at a disability organisation, as an advocate for disability and the rights of people with disability, as a volunteer for disability events and activities, or simply by volunteering a moment to assist an older person or person with disability with their groceries. Volunteering your time is simple and the rewards are plenty:
• You can leave footsteps on another’s heart, something that will never be forgotten;

• You can become more involved with the community, in particularly the disability community;

• You can meet new people and make new life-long friends;

• You can support children and young people with disability, older people, their families and the organisations that support them;

• You can gain new skills, knowledge and understanding;

• You can feel rewarded and appreciated;

• You can develop life skills;

• You can experience unique opportunities;

• You can develop a lifetime of special memories; and

• You can have fun doing it!

The personal sacrifice of time in your day is small when considering the rewards listed. Perhaps it is time for us to reward ourselves by supporting others!


Friday, April 9, 2010

The Value of Information

I would like to introduce a staff member of IDEAS who would like to share her experiences of her work within the disability sector and the importance of information in empowering and motivating an individual. Information allows people with disability, their carers and families to act and to find ways to live independently, information can lead to a greater quality of life and it is often knowledge that ABLES an individual. Please enjoy her story.

I work as an Information Officer for IDEAS NSW, an information service for people with a disability.

My role is as the first point of contact for people looking for information to assist them. I try to find the right service for the person to gain assistance from, whether that be supplier's of equipment, or accessible holiday options etc. Basically anything that we are asked in regard to disability we try to find the answer for. This makes my job challenging as I search for different things to suit different people daily. I never know what the next question will be!

I find my work particularly rewarding as I see people empowered by the knowledge they gain to assist them in their daily lives. This may be a little thing, like where to find a shower chair, or something seemingly larger like where to get financial assistance for oxygen support. This information empowers people with a disability and helps them to live more independent lives. For example, that information can enable a person to decide where to buy a set of small wheelchair wheels and a battery which in turn affords them significant independence and their carer relief.

Another example was a recent enquiry from a couple wanting to travel across the Nullabor Plains. We discovered how many accessible toilets are available. This allowed them to have the holiday they didn't think they could.
Information itself is necessary, particularly at turning points in a person's life or when a new situation arises. That's when it is very important to have a single point of contact that makes finding the solution less confusing. We often find that people are frustrated when they call us as they have tried so many other numbers to find the information or because they haven't been listened to. When they can contact us first, we can do the hard work for them.

Part of my job that I particularly enjoy is researching articles on accessible travel for our bi-monthly newsletter. I gain a lot of information for this research from our accessible accommodation database which I also help to maintain. As we are so busy answering enquiries this database is sometimes hard to keep up to date, so please call us to make sure you are getting the most up to date information on 1800 029 904.

My move from the dental industry to the disability sector has been thoroughly rewarding and I have found satisfying work in rural NSW. The skills I am learning I will be able to take with me anywhere.

This article was published on the carecareers website.

Thursday, April 8, 2010

The Story of Debapriya Roy

Sharing Disability Around the World

Hello, I am Debapriya Roy from Rangamati, Hill District of Bangladesh. I would like to share my story and tell you some things about me. I completed my Higher Secondary Degree and then was admitted to an Engineering University for higher study in 1974. In that same year I was accepted to take a scholarship to study in France.

On the 16th of January 1975 in the evening, I rode my motorbike to say goodbye to my friends as I was leaving for my scholarship the next day. But life had given me a different plan. During my travel I was involved in a collision which led to me being taken to the hospital. After a few hours, when my senses came back, I realised I lost the power to move both my legs.

I had a very bad bedsore and I spent one month in the local hospital without proper treatment. One of our family friends advised my parents to shift me to Memorial Christian Hospital, at that time he told my parents that in that hospital was the famous Dr Viggo Brand Olsen MD. After a month I was shifted to that hospital. I was under treatment of the great Doctor named Olsen (who is the founder of Mission Hospital) and physiotherapist Dr Larry Golen. They assisted me to improve as much as my health permitted.

Dr Olsen told me that my C-7 dislocated. I can sit on a wheelchair and walk a little with a parallel bar.
With the help of my Doctor I learnt Pathology and worked a year in that hospital. 3 years after the accident I came back to my home town, Rangamati. Disabled life is really very had in my country. There are no jobs available for disabled people, no financial help so it becomes a burden for families. If you visit my country you will see many disabled begging in the street for food with no good shelter to live in. Many live beside the road.
I have learnt how to help my people by doing translations into our language, Chakma. Everything I do shows that hard work must be done to assist these people.

I am trying to find an organisation or someone to help people with disability to access land and shelter, instead of living on the street. You are welcome to come to my country and to help assist people with disability.

Debapriya Roy