Friday, May 28, 2010

Patience and Persistence

Hi everyone, welcoming you to another blog from Rich Fabend. Just a side note, we in no way enourage the use of guns or promote hunting or anything of the sort. In Australia their are tight rules and restrictions and definite no-nos about the use of guns. I infact love turkeys as I think they are very fascinating creatures. However I think that there is a great lesson and moral behind the words that Rich has presented in his blog posts here, and that is about patience and adapting to change.

The great thing about his stories is that they portray that anybody can do anything, they just need the support, information and determination to do so. I think that Rich is a really wonderful example of someone who has all these values - not to mention his wonderfully creative mind to top it off. He lives in America and it is currently Hunting season there, thus causing the theme of his posts. But from his posts we can see that disability is a daily thing, however if we learn to live with it in our own way, it moves away from something that runs our life, to something that is part of our being.

Rich Fabend

I have waited for this moment for a long time. May 26, 2010 - 9:15 AM. Today I harvested my first turkey in 11 years. I had been an avid hunter prior to my disability. I believed I would never be able to hunt again, especially by myself. Today's success was the result of the labors of many people: my wife, who walked me out and help me set up, my nurse Rhonda, who came at 6 AM the mornings in May so I would have more time to hunt, my neighbor Mike, who allows me to hunt his land, my friend John, who gave me his time to set up blinds made out of snow fence and camouflage material, and so it goes. My wife likes to say "It takes a village".
I am also proud of myself. Over the 11 years, I got discouraged; turkeys often were close enough to harvest but something always went wrong. In the beginning it was my inability to camouflage my wheelchair well enough, then my finger couldn't pull the trigger, or I had a muscle spasm which alerted the turkeys to my presence and were instantly gone. But I persisted and attempted to correct the challenges as they presented themselves. But at the end of each spring I had the same results -- NOTHING. Often it was a process of trial and error, but gradually my efforts began to improve my chances. I created a trigger adapter which allows me to fire the shotgun using my mouth. Not only does this solve the problem of trying to find the trigger, but it also allows me to use both hands to steady the gun. At many points along the way it would've been easy to give up and quit. I know from experience it's a lot easier to give advice to others than it is to take it myself. So get discouraged, get frustrated, but don’t give up.
One of the things I like the most about hunting is that it is totally irrelevant to the game that I am an individual with a disability. To the turkeys I hunt, I am just another predator and that's all I ask for. Today was definitely a day worth waiting for.

Wednesday, May 26, 2010

Rethinking the Notion of the "Controlled" Epileptic (BADD 2010 entry...)

Another great post by the lovely Paula Apodaca. I am finding her to be quite amazing, inspirational and intelligent in her words and enjoy her perspective very much. But what are your thoughts?

Paula Apodaca

We hear the term “controlled epileptic” and we think of a person with epilepsy who only needs to take his medicine as he has been told to do to be able to control himself and his seizure activity. Reality for persons with E. is that "compliance" or the taking of one's medication as ordered, often bears no relationship to any specific level of seizure control. In other words, just because I take my meds is no guarantee that I will stop having seizures.

Guilty of both a misunderstanding and a misapplication of the term “controlled”, we are seriously wrong about the epileptic person to whom the term is applied and about the abilities of medical science (e.g. pharmacology) to meet our social expectations.
Most of us make this mistake honestly enough. Our society, like many others around the world, places a premium on moderated behavior. We refer to the act of moderating one's personal behavior as "self control" and identify the strength of character necessary to make such a personal exertion as "willpower". When we think of someone “losing control”, we think of an individual who stubbornly refuses to make use of his willpower to control himself.

We apply this same train of thought to a seizing person with E.. We view his act of seizing as somehow related to his willpower, character or intent and equate it with either disobedience or rebelliousness. Acts of disruptive misbehavior in a public setting, e.g. temper tantrums or seizures, are unacceptable to us and people who put on such displays are “out of control”. Having to witness out of control behavior makes us uncomfortable, distresses us and sometimes angers us.

A few years ago, my husband and I went to visit a friend in the hospital. While sitting in her room, I had a tonic-clonic event, i.e. a convulsion. Nurses were summoned, my husband attended to me, and when he asked them for assistance, they called security. Later, when we were leaving the hospital to go home, the nurse pushing my wheelchair leaned over to me and asked whether "...we had forgotten to take our meds today?".

As insulting as this sounds, it is all too common a response. Persons who should know better by virtue of their professions cannot resist the notion that somehow persons with E. are simply seizing to get attention. The notion of impudent and willful seizing is utterly ridiculous.
Still, there is a desire to believe that the controlled epileptic is a possibility. The idea persists among professionals and non-professionals, as well as among persons with E.. The differance is, persons with E. understand the distinction between the medical application of the term "controlled" and the ordinary use of the word. Too many professionals continue to insist on blaming the patient, rather than admitting that the treatment is insufficient.

The conflict between what is believed to be true and what presents itself as real, looms like a challenge to authority for some people.

But what authority are we speaking of and where did it come from?

In 1951, sociologist Talcott Parsons tried to describe formally what ordinary people already seemed to be acting on at some level. Parsons published his Sick Role Theory, and in it he described two rights and two obligations apparently binding for those who become sick in our society. They are: 1) that the patient is exempt from his normal social duties because he is ill; 2) the sick person is not responsible for his illness; 3) the sick person should try to get well; and finally, 4) the sick person should…cooperate with his physician.

Parsons' theory has been worked and reworked by sociologists to try to take into account the variations not accounted for in the Sick Role Theory. Parsons wrote what many plain folks already upheld: if you are sick, you aren’t to blame and you don’t have to work if you try to get well and obey your doctor, nurse, pharmacist, etc.

Here is the seed of the authority we have been searching for in this piece: an apparent bargain between society tolerating the sick so long as the sick respond by respecting our authority and being obedient.

But, what if they don’t seem to be obeying? What if they seem to be intentionally seizing all over the place?

In 2002, I read a copy of an email exchange between university administrators concerned with how best to handle students with E. who persistently frightened faculty and fellow students by seizing on campus, sometimes during class meetings. Shamefully, the initiator of the exchange was both a Doctor of Pharmacology and of Nursing and should have understood better than anyone the meaning of "control" as related to her students with E..

She queried her colleagues in cyberspace, seeking to know if any of them were experienced with this sort of situation. The replies were varied, but most offered that the best way to handle this sort of disruptive willfulness was to treat it as a problem of student conduct or behavior and not one of disability. They suggested that an "involuntary medical withdrawal" could work constructively in the situation, and in the student’s best interests. The conspirators pointed out that this was a good strategy for skirting the Americans with Disabilities Act, as well.

A few of her respondents mentioned taking such actions at their own universities, regaling one another with their success stories: one student eventually transferred to another university altogether. Problem solved.

What they all seemed to be unaware of was that twelve years earlier, before the email exchange took place, a woman with E., named Barbara Waters, gave testimony before Congress about her own situation at a state college in Massachusetts. She was being harassed and discriminated against by administrators at her college, who wanted to use the tactic of "constructive dismissal" to force her out. She testified she was about to be expelled from school: her college administrators told her that her seizures were "disruptive" and that her presence on campus was "considered a liability" to her school [2 Leg. Hist. (Barbara Waters)].

Thanks to Barbara Waters and others for speaking up. The results have been good for us all because, since 1990, the discriminatory and harassing tactic of “constructive dismissal” is illegal.

The meanings contained within our use of language often include unstated assumptions. Delving into those assumptions requires our participation. To change how people feel about persons with E., we have to be willing to open up and share our knowledge. It is the only way to dispell harmful and simple-minded understandings from either remaining or becoming widely held social expectations.

Tuesday, May 25, 2010

Macular Degeneration Awareness Week

Hi everyone,

I thought that an important topic for today was the rise of Macular Degeneration Awareness Week, which runs from the 24th until the 30th of May.

It is important that you act immediately if you experience vision loss, as Macular Degeneration is a condition that affects your central vision and is actually the leading cause of blindness in Australia (people over the age of 50 are more at risk). Symptoms should not be dismissed as just another thing that comes with getting older. Look out for the following symptoms:
  • Difficulty in reading or doing any other activity which requires fine vision;
  • Distortion where straight lines appear wavy or bent;
  • Distinguishing faces becomes a problem; and
  • Dark patches or empty spaces appearing in the centre of your vision.
I thought that this little message was important in recognising the theme of the week. So if your unsure perhaps visit your Optometrist as soon as you can.

It can't hurt right?!

As this post seemed particularly serious, as this topic should be, I thought I would lighten your reading experience with quite a nice quote from the amazing Martin Luther King, Jr:

"Occasionally in life there are those moments of unutterable fulfillment which cannot be completely explained by those symbols called words. Their meanings can only be articulated by the inaudible language of the heart."

The Traveller - Diana Palmer

Catching up with Diana Palmer and her travels, it is coming to the end of her massive journey. We are looking forward to hearing about the different things she has learnt and to being jealous over the billions of photographs I am sure she took. One can only hope to be so lucky as to be sent on an opportunity such as this. But the hardworking nature and exceptional perseverance of our Traveller makes her accomplishments and this opportunity, very worthy!

Cambridge-Monday 17th May

I will come back to this and add some photos in the next day or two when I have a stable internet connection, but want to keep people up to date. Today we had to make a calculated decision. We were due to fly to Prague on Wednesday, however with the return of (albeit short lived) the volcanic ash and the looming threat of strikes by BA we felt that Prague was a risk, so spent most of the day looking at other options. Our plans now are to stay in Cambridge until Wednesday when we will head to Harwich to catch a Ferry direct to Denmark, so I can be sure to reach Sweden for the conference next week.

In Cambridge we have been very lucky to be guests of a Fellow of Trinity College which has meant we are staying in the Old Guest Room at Trinity (Accommodation used by Byron some years ago). Cambridge is incredible - an amazing history lesson all rolled into one. So in between sorting out bookings we have been wandering the streets of Cambridge and halls of Trinity and other Colleges. Not a bad place to have to spend an extra night at - the only downside has been no internet access at our accommodation, so has caused some frustrations toing and froing from Libraries and cafes etc. Oh well if that is all there is to complain about...

Friday, May 21, 2010

Defining Disability

It’s difficult to define and describe a disability today! There are many ways to define what a disability is.

Currently around 1 in 5 or 20% of people in Australia have a disability, a massive number and each person has defined themselves as having a disability through one common definition.

Some books point out that ‘disabled’ is an identity that you may not have been born with. In fact often disabilities are acquired through means such as late-emerging effects of genetics, illness or accidents.

There are two main models that are used for defining a disability and they are the medical and social models.

The Medical model was created by the World Health Organisation in the 1980s and refers to three key defining areas: Impairment, Disability and Handicap. The Social Model looks at the way in which the lives of a person with a disability is affected by the barriers that society imposes.

However I think it is a lot more complex even, than these definitions.

Perhaps instead of defining one as having a disability, we should be defining and focusing on our amazing abilities! For they are the true mark and makeup of our identity!

But what do you think?


Wednesday, May 19, 2010

A Quality Day

Rich Fabend

When I woke up this morning at a quarter of six the temperature outside was 27°. Even though it is May 10th you have to expect the possibility of this kind of temperature when you live in northern New York. My nurse arrived around six and the day began. I was ready to roll a little after eight o'clock but was delayed because of a problem my nurse had loading my shotgun. Bundled up in camouflage, my wife and I finally headed out of the house. I'm fortunate to be able to hunt across the street on a large area of abandoned farm land. I motored down the driveway, across a field, down an abandoned road and drove into the field to the place where I was going to hunt. At the edge of the field I backed into an area of small trees and brush. One must blend in with the surroundings because turkeys have excellent vision and can spot anything out of place. Marge helped me with some final adjustments, covered my head with camouflage netting and left. Fifteen or twenty minutes after she left intermittently I began calling the turkeys. Turkeys call back and forth to locate each other during the mating season. Although it was cold with a brisk wind, it was a beautiful sun shiny day. Back in the hedgerow there was little wind and it wasn't long before I could feel the warm rays of sun on my face.
After a while I became aware of a bird jumping around from branch to branch. A minute or two later it landed on my shotgun barrel and stayed for about 30 seconds. It was Black-capped Chickadee. They are cute and entertaining little birds. I glanced at its feet gripping the barrel of the shotgun. How can anything be so delicate? Even though we can have brutal winters, Chickadees are year-round residents. After it flew off I called a couple more times. Slowly my eyes began to close and I nodded off in the warm sunshine. When I awoke again the grass in the field was bending in the wind, as were the trees and bushes directly across from me, every shade of green rocking in the wind. I heard the raucous call of a crow. It kept repeating and each time after it was done I listened intensely for a gobble that never came. Often in the early spring during the mating season male turkeys will gobble when crows are calling. Again I became aware of movement in the bushes around me. This time it was a pair of Wood Thrushes who were also involved with the spring mating ritual. They have one of the most beautiful calls of the early spring morning but these two had other things on their mind.

Sitting in the warm sunshine calling, nodding and watching, the morning passed quickly. I soon heard my wife's voice as she arrived to walk me home. The hunting time ends at noon each day and Marge insists on walking me back home. Tomorrow is another day. Oh, by the way, I didn't see or hear any turkeys, but it was only noon and I had already had a quality day. At one point during my recovery I never thought I would enjoy a day like this again.

Tuesday, May 18, 2010

Quality Accessible Tourism

This is quite an interesting article taken from the Business 21C Website about Tourism in Australia for people with access difficulties. The tourism industry really needs to be aware of the issues around tourism in terms of allowing for all individuals. We want everyone to be ABLE to experience Australia. There is a video so go to the site and check it out. Join in the discussion, let me know what you think about Accessible Tourism!!!!

Accessible tourism: linking demographic change and social sustainability to business success

Cities and organisations have responsibilities for citizens of all abilities. Associate Professor Simon Darcy asks, how can spaces, places and experiences be framed to provide an equality of experience?

The United Nations’ Convention on the Rights of Persons with Disabilities guarantees people with disabilities access to all areas of citizenship. The 650 million people with disabilities and estimated 1.2 billion people over the age of 60 by 2020 are both a significant challenge and market opportunity for cities and service industries.

I led a research team in the Visitor Accessibility in Urban Centres project funded by the Cooperative Research Centre for Sustainable Tourism.

The research focused on accessible tourism – covering visitors with mobility, vision or hearing impairments or learning difficulties – who are estimated in the report to account for 11% of the total tourism spend in Australia.

The motivation behind the study was to discover the quintessential experiences of Sydney, as the national tourism gateway, from the point of view of the accessible tourism market.

The findings have been broad-ranging with the potential to be ground breaking. The research looked not simply at what accessible tourists ‘can’ or ‘can’t do’, but at the quality of experience they have when they do their tourist thing in and around Sydney’s central business district, Rocks area and Harbour foreshore.The aim was to create a process incorporating universal design and inclusive practice for developing information, marketing and promotion approaches that would provide tourists with access needs with a framework to make informed choices for their tourism intineries.

The project was based on a participatory action approach that worked with major industry stakeholders and service providers to identify what first rate accessible experiences existed and to create an understanding that these are valuable offerings to travelers with access needs.

Many of the service providers had not considered tourism as a component of their operations. What was exciting about this study was that no new accessible experiences were created for the project, instead all the experiences identified were already occurring within the stakeholder and service provider operations, and needed to the reframed within an accessible tourism context and collaboratively marketed.

Accessible tourism is about access for tourists with a range of impairments, from the most readily recognizable needs of wheelchair users for continuous pathways to attractions, way-finding routes and so forth, to alternative communication strategies for people with vision and hearing impairments. Strategies that benefit people with disabilities often translate into benefits for other sectors of the community including people from non-English-speaking backgrounds, families with children in prams and employees who require safer working environments.

The starting point of the study was to consider what would any tourist visiting Sydney want to experience: the views, the Manly Ferry, fish and chips by the water, a sense of the history of the original colony, perhaps. The restricted starting point of what people with disabilities can or can’t do was ignored. After all, few tourists want a list of do’s and don’ts. They want accurate information to enable informed decisions about how to enjoy the city they are visiting. The accessible building blocks of any trip were brought together – transport providers, wayfinding maps, toilet locations – so that planning could be done in the one the virtual location.

The next step involved discovering 20 accessible destination experiences that could be used for tourists with access needs. The Art Gallery of New South Wales’ popular monthly Auslan (Australian sign language) interpreted after-hours gallery tour, allows hearing impaired visitors to engage with the guides and the venue more thoroughly than any written guide ever could; The Royal Botanic Gardens’ Aboriginal Heritage guided tour where people with vision impairments can touch and feel the plants – crush the leaves between their fingers, appeals to an innate desire of many tourists to engage in a sensory experience of a new place, its food, the wine, the song and dance, the aromas.

The report also uncovered opportunities for deeper understanding of the experience of tourists with access needs, and to improve the service offerings. One bugbear, particularly for mobility impaired travellers is finding suitable and enjoyable accommodation.

In Sydney, a key feature of quality accommodation is a view. Yet in the whole of the Sydney CBD and tourist district, there are currently only four accessible hotel rooms that have a Sydney Harbour view and six with a Black Wattle Bay view. Architects may meet the building requirements by including accessible accommodation, but these are often located in the least attractive part of the hotel – near the delivery dock or loading bay, or over a back lane. Such rooms simply do not provide a quality Sydney experience. One hotel actually converted a room with a view to cater for celebrity wheelchair user Christopher Reeve’s visit in 2003, but converted it back to non-accessible once he had left.

On the other hand, some hotels have understood the opportunities of the accessible tourism market, even catering for cultural differences in what is understood by ‘accessible’ in different parts of the world. Wheelchair users from western cultures are most likely, for example, to expect access to a roll-in shower. In Asian cultures, however, wheelchair users will expect to have a bath, and will look for accommodation with transfer-over baths. Some of the big chains have successfully developed a niche market servicing these customers.

The Visitor Accessibility in Urban Centres report, has a wider application, both in establishing the value of the accessible tourism dollar to the Australian economy through using mainstream economic modeling techniques in conjunction with Professor Larry Dwyer of UNSW. The economic modeling showed that tourists with access needs already accounted for a significant 11% of tourist spending, or $4.8bn. Yet they encountered many constraints to what most other members of the public visiting the city would consider to be essential.

The final aspect of the research was to create the portal that provides quality information for tourists with access needs looking for accessible destination experiences. The portal also provides opportunities for collaborative marketing and branding activities for the organisations and experience providers. In the 18 months of operation, it has received over 20,000 hits from 110 countries and has received a number of awards for access innovation. The City of Sydney has recently provided a further grant to extend the precinct cover to Darling Harbour and to include an accessible accommodation section.

Ultimately, accessible tourism in Sydney is an issue of equity, economics and citizenship. Quite simply if cities and service providers are not preparing for the ageing of the population and the increasing expectations of people with disabilities, they are not acting in a socially sustainable manner. Dr Darcy’s report argues that in meeting the needs of this significant group of visitors tourism providers can strengthen their business across all market segments and build a niche within a dynamic and ever evolving group of travellers.

Wednesday, May 12, 2010

Caring for the Carers - by Stephanie Dowrick

Hello to everyone! I have a very interesting post for you today from a writer and novelist, Stephanie Dowrick. Her words on paper are quite extraordinary and I feel privileged to be able to share some of those words on the DisCo blog. I invite people to comment and to partake in discussion about her inspirational voice. This article was published in the Good Weekend Magazine on the 2nd of May 2010. To find our more about her writings visit More practical psychological and social support is offered in Stephanie’s books, especially ‘Choosing Happiness: Life and Soul Essentials.

If someone is struck by a serious illness, compassion abounds, but spare some for the caregivers, too.

One of the most challenging roles that any of us can find ourselves in is that of a carer. I am not thinking about professional carers now. They also do a fine job but can go home at the end of a shift. Nor, in this instance, do I mean parents of ordinarily robust children who will in time grow up, leave home and make lives of their own.

What I am thinking about are people who through illness, accident or fate find themselves in a situation in which their life in almost entirely focused on the needs of another person. Sometimes this is a permanent situation. And that requires massive inner adjectments for carers as well as the more obvious changes in their outer circumstances. Sometimes the situation is more temporary. Yet often that experience is also extraordinarily damaging, not least because of fears that it may end in death.

Either way, few of us can accurately predict how a serious illness or disability will play out. Nor can we generally foretell what kind of patient we will be – or what kind of carer. I have witnessed so much unnecessary suffering when a patient gives themselves a hard time for not feeling like a saint or a hero in the wake of a serious accident or diagnosis. In fact, some studies show that patients who speak up about their pain or fears or complain loudly will do better psychologically than those who are more compliant and accepting. There are many ways to complain, however, and only some are helpful. Complaining to (and questioning) your medical team is one thing. It’s something else again when a patient trivialises, criticises or overlooks what their carers are doing because it doesn’t fit their idealised fantasies of a perfect carer.

The entwined roles of patient and carer are intimate and complex. When they are played out over months or years rather than weeks, they may arouse deep and unexpected emotions. Those emotions can be unwelcome, but if everyone is to move on without feeling exhausted or resentful, they have to be acknowledged. Because emotional support matters so much, changed relationship dynamics deserve every bit as much attention as the illness itself. People will often be highly focused and responsive in the drama of a new diagnosis. But as time goes on, and as chronic or unpredictable illness or disability becomes a new way of life, strong feelings of any ambivalence are likely to emerge. Dependency and neediness arouse confronting emotions. So do worries about how adequate (or not) everyone is feeling.

Even the most loving relationships rarely have to accommodate the degree of commitment, selflessness and tenacity that serious illness or disability demands. Nor do they have to encompass the intense vulnerability of an adult depending on others for their most basic person needs. In these situations, mutually itself may need to be redefined. If the person who is ill has more usually been the caretaker, this can feel like a dramatic loss of self. It can be equally devastating for someone used to being “in charge”. Rethinking your attitudes and sense of self is one of the hidden challenges of illness.

Clearly, carers also need care. Their needs might be secondary but cannot be forgotten. They need consideration and lots of appreciation from others. They need opportunities to grieve for their old life and freedoms without feeling guilty. They need chances to explore what being a “carer” means to them personally rather than generically. They need clarity about what would most effectively support them. And, just like the patient, they need space for the joys and resources that remain untouched by illness.

By Stephanie Dowrick

Monday, May 3, 2010

The 1000 Voices Life Story Project - by Sally Robinson

I don't know if my followers have heard of this program, but it is definitely one to watch. The 1000 Voices Life Story Project is quite an amazing project currently being developed by the Griffith University. I have asked Research Fellow, Sally Robinson, to provide a bit of information about the project. I advise visitors to this blog to look out for this project and to share their story! Learn about the Power of Sharing Life Narratives.

Sally Robinson

The purpose of the 1000 Voices project is to collect and display 1000 life narratives from people with disability from around the world.

With this collection of narratives we hope to build awareness of the lived experiences of people with disability; to provide opportunities for people with disability to have their own voice in determining how their lives are seen and heard; and to make sure that these voices become part of ongoing research, service, and policy development activity in Australia and beyond.

The project will centre on a public interactive website that will display and catalogue a minimum of 1000 life narratives from participants in Australia and participating countries.
 These life narratives will be presented in a number of multimedia and textual formats to accommodate our participating narrators’ communication abilities and needs.

Over time, the 1000 Voices project aims to:

o provide an accessible forum for the telling of your own story for people with disability;

o promote life narratives from people with disability to a wide international audience;

o facilitate and acknowledge many different ways of telling your story: narratives are not limited to written text;

o empower people with disability by giving them access to shared experiences of others;

o provide a link to national and international research and policy that can result in larger scale systemic change;

o provide a vast database from which policy makers and program developers or communities can find out more about lived experiences of people with disability.

During the next year, we have four main activities underway. These are:

1. To build the stories on the website – in terms of both numbers and diversity

2. To develop a training module for people with disabilities and their families, on a variety of techniques for life storytelling, as well as practical assistance on different formats that can be used on the 1000 Voices website

3. To start research about how these narratives can collectively influence policy and practice in human and disability services arenas

4. To bring together an international group of researchers and partners to set a research agenda and to hold a symposium about narrative and research which includes people with disability