Monday, January 31, 2011

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?

Thursday, January 27, 2011

People with Disability in the Australia Day Honours List


Australian readers will have enjoyed their Australia Day public holiday yesterday, a day of BBQs, listening to the JJJ Hottest 100 and generally enjoying the sunshine. International readers may not be aware of Australia Day and it's history, so you might like to read more about it here

One important aspect of Australia Day is the Australia Day Honours List, in which Australians are commended for their contributions to the ongoing development of our nation. 

In Australia, we have plenty of people with disability doing things to not only improve the lives of people with disability, but everyone else as well.  The people listed below have been honoured in the 2010 Australia Day Honours list.  Below is a short description of their achievements.

Professor Ron McCallum (AO) (Senior Australian of the Year)


 Professor McCallum received his award for his commitment to the rights of working people.  He was the first totally blind person to gain a full professorship in any Australian and New Zealand university.  He went on to become the dean of law at Sydney University, where he specialised in industrial law.  He is currently the chair on the monitoring committee for the United Nations Convention on the Rights of Persons with Disabilities.  He is also involved with 2RPH (Radio for the Print Handicapped) Vision Australia and the NSW Disability Council.

“Uncle” Lester Bostock

Uncle Lester received his award for services to the media, indigenous people and people with disability.  He was the first indigenous president of SBS radio and producer of radio programs.  He has been a board member of the Aboriginal Disability Network since its founding in 2002 and has been a member of People With Disability Australia since 1995, becoming a life member in 2005.

Joe Mannix

Joe received his award for services to the community through advocacy, social welfare and disability services.  He has served on the boards of organisations such as the Disability Discrimination Legal Centre, People With Disability Australia, Glebe Youth Services, Rozelle Neighbourhood Centre and the Tenants Union of NSW. Joe also tutored seniors computer programs in 2006.

(This information has been taken from www.gg.gov.au)

IDEAS NSW would like to offer congratulations to Professor McCallum, Uncle Lester Bostock and Joe Mannix!  

Mental illness is not contagious, mental illness is not a choice, KNOWLEDGE IS POWER!

I recently came across Kim Hix's blog and I really appreciated her open and honest descriptions of her experiences being a parent of a child with a mental health diagnosis. Kim has approached parenting with a great amount of creativity, and I loved reading about the book she has written for her son called "No one is perfect, and you are a great kid". Doesn't that say it all? I am really pleased to have Kim as a guest blogger today. Thanks Kim!

Kim Hix 
I was asked to write a post so kindly by Emma and am more than honored that she asked. When deciding what to write about she suggested what I know, or what I am passionate about, so that was pretty easy. I am passionate about my kids, and especially bringing awareness to Mental Health issues in our children. More specifically to "Stomp Out Stigma" (see our cause on Facebook and join http://www.causes.com/causes/375639

I am passionate about this subject because my oldest child, Zack, now 15 was born with and has developed an array of mental/emotional illnesses. To date, he is diagnosed with IED (Intermittent Explosive Disorder ) OCD, ADHD, Severe Anxiety and a strep infection brought about TourettesDisorder Spectrum (this is called PANDAS, Pediatric Autoimmune Disorder Associated with Strep), as well as 3 head traumas. 

So, with all of this, needless to say our lives are quite chaotic and uncertain most of the time. However, Zack is quite a loving, HUGE hearted, caring, smart, and talented boy. Life with a child such as mine is "Predictably Unpredictable" as parents who love a child with any kind of disability will know and be able to relate to. I have devoted my life, since his birth, to helping him to become the best person possible. I am also determined to help other families on this same journey realize the are NOT alone, and to help others that do not have intense children as I do, realize that inappropriate, bad behavior does NOT = a bad kid. So many people see only the behavior, usually exhibited when the child is unstable, as a child out of control, manipulative, mean, spoiled or attention seeking. In most cases this is not the true personality of the child. I want people to understand that some kids, as well as adults, simply can not control emotions, responses, reactions or behavior, not because they do not want to, but because their brain simply will not allow it. 

I can obviously go on about this subject for hours but will not do that here. I have started a blog to hopefully share our story with other families that are on the same journey we are, to let them know that their circumstances are NOT unique. Along with my site www.youareagreatkid.com that offers some resources as well as the childrens book I wrote for and about Zack to help other kids like him who feel different.  If we, as a society, talk more about this then the stigma will eventually fade. If you would like to read our story please follow our blog here:http://goodboyroy.wordpress.com/our-story-the-journey/ from the Goodboyroy.com site. And if you want to know what is GoodBoyRoy.com, well....you can find out about that too. 

Remember, you, as the parent, are your childs BEST advocate. The more you know, the better equiped you will be to help them and help others understand. I will leave you with this, our motto: Mental Illness is Not contagious, Mental Illness is NOT a choice, Knowledge is Power.

Tuesday, January 25, 2011

Learned Empowerment or Learned Helplessness. Your Choice.

Today we have another post from Rich Fabend. I really enjoyed the practical and commonsense nature of this post, and I think Rich's tips for finding creative solutions are relevant to all of us whether we have a disability or not. We all face situations which we can easily "put in the too hard basket", and as Rich says it's your attitude that determines whether or not the situation gets put in the basket or taken back out!

Rich Fabend


I sat in the chair looking at the piece of paper I had just dropped on the floor. I needed the paper for what I was doing so I had to pick it up. No big deal. Right? WRONG, it was going to be a problem. I couldn't bend over to get it and I couldn't get out of my chair and walk over to pick it up. You see the chair I was sitting in was a power wheelchair. Many of the simple reflex actions I used before my quadriplegia still came to me rapidly when I needed to solve a problem. Today was different and I knew it. My wife and my nurse were both gone at the time and so was the option that they could pick it up for me. I knew I had a major challenge before me the resolution of which would affect me the rest of my life.


As a teacher I had been working with students for over 34 years and was involved with some unique adventure based activities which tried to teach students to find alternative ways of problem solving. Mostly as a result of these experiences I truly believed there was a simple way to pick up that piece of paper. The real challenge I faced was to figure out how to do it. The solution finally came to me although it was not that day. Like most of my problem solving creations the answer was the result of hard work, frustration, failure, modifications and persistence. The ultimate success of my solution encouraged me to move on and find other simple methods of adapting ways l could solve other everyday challenges.


I believe the key lies in one’s attitude. It is human nature to rely on methods and solutions which have been successful in the past. This often encourages us to use only limited means to accomplish a given task. When speaking to a group I like to use the example of catching a fish. If I choose ten people in the audience and ask them to catch a fish for me, chances are great the majority would grab a fishing pole and head to nearby body of water. When initially dealing with the challenges placed on those of us living with a disability, I think we often try to solve problems using the same skills we used before our impairment. This approach can create extreme frustration and an acute awareness of the limitations placed on us by our condition. Now suppose I presented this same challenge to an audience of people from the United Nations.


It is a real probability we would see a variety of methods which could include nets (both casting and stationary), wiers, noodling, spears, spear guns, bow and arrow, or use of other animals, such as cormorants and many additional ways. So in reality, if we think about it, there are usually many ways to solve a particular problem. The first attitudinal change must be the understanding that more than likely there is a solution for what you are trying to do. Begin by freeing ourselves of cultural restraints. At times such limitations are really in our own minds. Learn to think outside the box and experiment with different approaches. I have become convinced over the last twelve years that attitude is much more important t than ability to individuals who are physically challenged. Looking at a new situation not as a problem but as a challenge needing to be met, may actually set one’s mind free of the mental restraints which prevent finding a solution. This initial attempt at finding a solution, I believe, is of critical importance because it will establish a lasting mindset. I can or I can’t; which will have greater significance for the future? If we give up or allow failure to deter us from continuing, the implications are obvious. Failure, if approached with the right attitude, provides opportunity for learning and hence for growth which eventually can lead to success. If a small child decided there is no reason to continually struggle to get up after falling down time after time, he or she would never learn to walk. I had a graduate student in a workshop sum up my supposition in an e-mail she sent me: ”I was particularly struck by your juxtaposition of self-created learned helplessness (I can't do that, so how can I do this) with what I might call learned empowerment (I can do that, so why can't I do this?)”


Some suggestions I would make in regards to finding alternative solutions:


1. Know there is a way.


2. Keep things simple.


3. Don’t get discouraged and give up. Professor Randy Pausch in his book The Last Lecture wrote, "The brick walls are there to give us a chance to show how badly we want something".


4. Think of failure as an opportunity for learning and growth.


5. Observe with an active mind. After noticing hockey and lacrosse players had placed continuous wrapping of tape on their sticks to prevent their hand from sliding past a spot, I decided to do the same. The placement of these “stops” allows tool manipulation without a strong grip.


6. Think outside the box.


7. When possible make tools multi-functional. Try to create tools that can be used for different purposes.


8. Make tools interactional. Any one of my tools can be used to pick up a different one if I should I drop it.


9. Be willing to modify. I am constantly revisiting the tools and ideas I have already come up
with to try and improve them or make them more functional.


10. Be open to the suggestions and ideas of others.


11. Remember success builds success.




How did I pick the paper up? Go to web page http://www.handihelp.net/8187/index.html


Thursday, January 20, 2011

Maternity Rolls: Pregnancy, Childbirth and Disability

After blogging about pregnancy, parenting and disability last week I thought it was rather serendipitous to discover a book review of Heather Kuttai's "Maternity Rolls: Pregnancy, Childbirth and Disability" written by Judi Lipp from Northcott Disability Services in Volume 26, No 4, of the Journal of Independent Living Centres Australia.

The editorial description of the book on Amazon says "combining ethnology and memoir, this fascinating book describes the issues surrounding childbirth and motherhood for disabled women. The author, a paraplegic, tells about her own hunt for medical advice before getting pregnant—and then about the normal births of her two children—before widening the conversation to other disabled women and sympathetic members of the medical community."

Judi Lipp's review provides a little more detail. She says "this book is beautifully written and structured. Thoughtful quotes add meaning to the pages, diary entries emphasize the personal tone and extensive notes and references add weight to the well researched content. This book challenges the beliefs that people in wheelchairs need care, and cannot be caregivers."

I'll definitely be requesting this book at my local library. I'd be interested to hear if anybody else has heard about it, or even better read it? Any other book recommendations on this theme?

Wednesday, January 19, 2011

Crossing Over

Today we have Rich Fabend's first guest post for 2011. I really enjoyed reading this post which touches on dreaming and spirituality. Thank you Rich!

Rich Fabend

It's estimated that approximately 10, 000 individuals suffer permanent paralysis from spinal cord injuries (SCI) every year in the United States. While most are ordinary citizens sometimes it happens to well-known celebrities like Christopher Reeve. Reeve, a famous actor, was probably best known for his role as Superman in a number of movies in the late 1970’s. Reeve’s fall from a horse in 1995 left him a quadriplegic. As an activist for SCI he brought much attention to this condition. He died in October 2004.


Christopher Reeve and I have several things in common besides quadriplegia. Although uncommon we, both had very little atrophy as a result of our paralysis. In the 12 years since my own accident I have lost only three quarters of an inch off my calf muscles. Another thing we had in common is that neither of us had ever dreams with ourself in a wheelchair. The only exception for me was one night, after a very nerve-racking out of control situation during the day that really scared me. Excluding that single time, I live in two worlds; the reality world where I am physically confined to my wheelchair and the dream world where I am free of any constraints. Many mornings I wake with pleasant memories from my night’s sleep. The dreams are extremely vivid and realistic, filled with physical activities rooted in my pre-accident life. I am often running through open woods pursuing a turkey I hear in the distance. (I am an avid hunter).


My "Dream World"

 At times I’m riding my bike at a frantic pace feeling the wind on my face. Other times I am swimming in the Hudson River where I grew up as a child. Recently, I dreamed I was lost in a large construction site which was more like a maze than anything else. Frantically I tried to get out; running, jumping over obstacles, climbing and even lowering myself over walls and then dropping to the ground. My dreams seem so realistic that often I am disappointed when I have to get up and “change” worlds.


As I’ve grown older I have begun to think more frequently about dying. I don’t consider myself a religious person but rather more of a spiritualist. For a Christmas gift I received a CD of Christmas music by Annie Lenox. Besides the moving song Universal Child I found a wonderful explanation of her personal religious beliefs in the jacket lining. She wrote:


“While I don’t personally subscribe to any specific religion, I do believe that the

heart of all religious faith has to be rooted in love and compassion, otherwise it

serves no purpose.

For me, the word ‘Christ’ represents the sacred and mysterious divinity of life…

this could just as easily be ‘Buddha’ or ‘Allah’.

The words from the Bible, the Torah, or the Koran are too often misused to justify

viewpoints that oppress defy or create discord rather than engendering empathy,

harmony and respect for each other, accepting and embracing our differences,

whilst realizing that we are all human with the same strength and weaknesses.”

Friday night I had another very vivid and physically active dream. I was running and climbing in a beautiful fall woods. I was with two neighbors from where I used to live. I could hear the leaves crunching under our feet as we ascended the hill. Periodically, we would stop at a clearing in the woods to look at the beautiful vista that was open before us. My friends were much younger than I was and so I was constantly trying to catch up. When I did, we would stop, talk, drink some water and then we were off again. After a while I became aware of a buzzing noise which seemed very out of place. I realized it was my wife's alarm clock; and slowly and very reluctantly I began to return to my other world. I have no personal belief in heaven or hell but I spent the better part of the morning thinking how wonderful it would be if the process of death could just be the Crossing Over from my reality world to my dream world.

My "Reality World"

Tuesday, January 18, 2011

A little more of One Month Before Heartbreak

Today's post is another One Month Before Heartbreak reblog (with the author's permission of course.) You can read the original post here. If you haven't already read the hundreds of posts up on the One Month Before Heartbreak site, I wholeheartedly recommend doing so.

Dermorgenstern

The heartbreak has already started, it started the first time a government minister raised the idea of changing Disabled Living Allowance (DLA).

I’ve been trying to write something for One Month Before Heartbreak, it’s been frustrating because it never quite works. So here I am again, trying a different angle in the hope I can write something I’m happy with.

I was reminded recently of a quote from Thomas Jefferson, third president of the United States.

“When governments fear the people, there is liberty. When the people fear the government there is tyranny.”


As a disabled person living in the United Kingdom today, that quote means something to me. To be honest, it’s meant something to me for quite a while, the tyranny started long ago.


Disabled people in the UK have feared their government for a while now, maybe not in the form of a particular government minister, maybe not in the form of the government itself. But certainly in the form in which most disabled people come face to face with the government, through the DWP, or one of its proxies known as Atos healthcare.

I can only describe my own experiences, but I do know that many other people have had similar experinces.


It starts with a letter from something called Atos, the first time you receive one you read it through and think, oh, it’s a medical, that’s fine. I know that I’m disabled, my doctor thinks I am, so does the specialist I’ve been seeing, I know they have both sent supprting statements for my claims, I’ve seen those statements.


On the day of your ‘medical’ you go through your usual routine not knowing any better. I sat with my Tens on for about 45 minutes prior to leaving, just to make my life a little easier as I do every morning. You turn up with the copy of your letter, your proof of ID, and you wait, and you wait. Eventually you’re called into the exam room and the questioning starts.


This is where you slowly start to wonder what is going on. I started answering the questions I was asked only to be told about half of the time that I was answering them in the wrong way, I also kept being told that neither I, my GP, or the specialist knew what we were talking about. I was also told that some of my symptoms couldn’t possibly be connected to what was supposed to be wrong with me.

The physical examination came next, but it wasn’t an examination, it was an assessment. He just wanted to see how far I could move, and again I was in the wrong. By this time the effects of my using the Tens earlier were wearing off and I was feeling rapidly increasing levels of pain. Obviously my range of movement reduced as the pain increased, trying to explain this to him was pointless, as was trying to tell him that I could do many of the things he asked me to once, but that trying to do it a second or third time would be too painful. He didn’t care.


By this time, I was in a lot of pain, I was confused and I just wanted it to end, but no, he now wanted to read back what I’d told him to make sure that I was happy with what he had written. I really didn’t care and as what he said sounded vaguely like what I thought I’d told him, I just agreed and said I was happy, anything to get this ‘medical’ over with and get out of there.


A few days later I found out what a mistake I’d made, although I had been given an award, his slight twisting of what I’d said had made it appear that I wasn’t really quite as bad as I was. After what I’d been through I didn’t really want to make a fuss, but I steeled myself and rang the DWP. After I explained the situation I was told that I could go through the whole thing again and be reassessed, but that it was doubtful it would make any difference to my award, and that I could make an offical complaint, but for that to be successful I would have to show that there was a substantial difference between what I had said and what he had written.


At that time, with no experience of the benefits system, having just been through one ‘medical’ that left me in great pain and feeling humiliated, and realising that no matter what I said, there was no way a complaint would make any difference, I gave up.


What that first examination, and the ones that followed have taught me, is that you learn to fear those assessments, you learn to fear Atos and it’s employers, the government. You fear the assessments and Atos because no matter how many times you go for them you have no idea what they are actually looking for, what the criteria are, or how qualified the person assessing you is to make a judgement about you. You fear the state because no matter how badly Atos treats people, no matter how many times they screw up and no matter how many appeals against their decisions are won, the government keeps renewing their contracts. I worry that I will be the next person who will have my benefits stopped on a whim and have to fight to regain them.


So now, when that envelope drops through the door I start to panic, I stop eating properly, I stop sleeping properly and that goes on until I have been for the assessment and it carries on until I get the next letter with the decision.


None of that is good for my health, but now it’s worse, I fear what the government will do with DLA. This time though, I have a month until the consultation is over, and then there will be a wait to see what the government will do. So I can look forward to at least another month of ruined sleep patterns, alternatively not eating properly and binge eating for comfort. At least another month of fearing what this government will do.


I spent close to seventeen years serving this country in its armed forces, do I have to spend as many years fearing this tyranny, and the ones that follow it, as they try to remove my freedom to have a life worth living?

Monday, January 17, 2011

One Month Before Heartbreak

Today’s post is written by Carl Thompson who is the man behind the fantastic blog Working At Perfect. Carl is from Victoria, Australia, and describes himself as “Wheelchair User (Cripple), Writer, Student, Music/Audio Nerd, Gamer and Cricket Tragic”. He writes regularly for the new ABC Ramp Up site and for DiVine Victoria.


I first came upon Working at Perfect a few weeks ago and since then I’ve enjoyed reading Carl’s thoughtful and humorous posts, and I am really happy that he will be contributing to DisCo over the coming months.

A little background to today’s post... Have you heard about One Month Before Heartbreak? It’s a Broken of Britain event organised by some UK bloggers including Emma Crees who as you will remember has guest posted here before. One Month Before Heartbreak is a “blogswarm” event, similar to Blogging Against Disablism Day, involving people getting together to blog about a subject or theme during a specified time period. The “swarm” of blog posts should attract attention and raise awareness.


So why is it called One Month Before Heartbreak? On Emma Crees’ blog A Writer in a Wheelchair, in the United Kingdom there is an ongoing discussion about DLA reform ends on 14th February 2011. Emma explains that 14 February is “Valentine’s Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name of this event.”

I hope you enjoy Carl's post. It's fantastic to see how much unity One Month Before Heartbreak is demonstrating both in the UK and across the world. (Thanks Carl!)

Carl Thompson

Luckily for me, I'm not an English citizen, and I'm not facing drastic transformational change in every facet of my life in the coming months. I have stability, I know that I am eligible for my much-needed disability support pension payments, I know when I will be paid and how much I will receive. For me this is clear. Unfortunately, for English citizens under the Conservative government led by David Cameron, all people with a disability, their carers, families and friends will be profoundly affected by a proposed drastic change in the degree of financial support they will receive.

As mentioned prior, I'm not an English citizen. I don't claim to know the ins and outs of their welfare system or their political structure. Here I will not waste words trying to explain to the letter what the changes will be - it would be much wiser to read the ‘One Month Before Heartbreak’ entries written by actual British citizens if this information is what you seek. What I do know however, is that English men, women and children are facing the repercussions of the implementation of multiple government policy changes that aim to pull their country out of a recession - seemingly a noble cause.


The question is how should this be done? Well, according to many governments around the world, the answer is by introducing spending cuts. Cutting wasteful spending and cutting discretionary services are two common methods of tightening a nation's budget. So let's think about that for a moment, and try to relate it to be problem this whole piece is about. In what conceivable way can money that is directed to supporting millions of Britons living with a disability be deemed wasteful or discretionary? This money is used for these people to survive, and survive being the operative word - This money is not surplus to their needs, it's barely enough for them to live day by day. So why is the government even considering making regressive changes in this ever so important area? I don't know the answer, if you do, please tell me.

So let's assume the money has to be cut from somewhere and inevitably someone has to lose out - we can't all be winners now can we? But doesn't it make sense that the government should implement cuts, or perhaps raise taxes on those who can actually afford to cope with the changes? Admittedly, I'm not an economist, but I'm also definitely not a socialist. I do believe in commonsense though, and the slashing of payments that are vital for keeping people with a disability afloat does not make any sense in my mind - none at all.

But wait! On the other hand, it does make sense – if you have to disadvantage someone, if you have to cut money from an interest group somehow, why not cut it from those that the government perceives will make the least amount of noise? How about we make spending cuts affecting those who won't be able to fight back or make a fuss? People in the deaf community won't hear about the cuts on the radio and those with a vision impairment may not be able to read about them in the morning newspaper. Users of electric wheelchairs would not be able to climb the steps of Parliament house to protest their governments' changes and the bedridden are of no risk of protesting in the streets. Now perhaps, the cruel motives behind these cuts are starting to become clear.

There is hope however, and that is the Internet. To be honest, if their archaic policies are anything to go by I'm not sure the Conservative party in Britain quite have a grasp on how the Internet works just yet, but hopefully they will find out soon enough. I'm told that I personally spend too much time online, and many of my online friends with a disability have similar Internet habits. So what does this mean? People with a disability can protest, we can type - be it via Voice recognition or otherwise. We need to use our strengths and rally together as one.

The Conservative party of Britain will realise that people with a disability do indeed have a voice, an opinion, and maybe more importantly, a vote

Friday, January 14, 2011

Being Disaster Prepared

I'd like to thank Leonie Hazelton for offering to write today's guest post about being disaster prepared, particularly if you have a disability.

Leonie Hazelton

Everyone who has commented on blogs such as the Sydney Morning Herald online, Twitter and everywhere else in the media says how devastating the floods in Queensland, Australia, are and how sorry they are for the people who are affected.



I empathise with these things, but it got me thinking, how would natural disasters or emergencies affect you if you had disability?


I know personally I’m worried about family up in Queensland with disability and I’m concerned about what would happen to them if they were told to evacuate. Would they be prepared? Where would/could they go and how would they get there? Also, what would happen to their dog?


I decided to consult my internet best friend, Google, and found this site by (appropriately) the QLD government discussing this thing called REDiPlan, sponsored by the 1st National Real Estate Foundation. It’s a booklet and a series of worksheets for people with disability and their associates about how to prepare for emergencies or natural disasters, and you can find it here.


I had a quick read before I posted and while all this stuff seems like common sense, as a community in general, we don’t like to think about this until after the event, and that’s a bit too late.


I found these tips useful in preparing for disasters and wondered about how personally I could implement these in my life.


Know Your Neighbours


Thankfully we’ve got great neighbours who have helped us out in disasters of our own. (Power outage) They’re organised and have good emergency readiness skills. (He’s a scout leader) And even though we don’t know the other neighbours as well, we know that we can call on them in an emergency situation.

Prepare a kit


This is where the organised bit comes in. Being a disorganised person, this could be where my disaster plan falls on its face. In the kit, it’s suggested you have things like water, canned/dry food, torches, globes and batteries, spare batteries and charges for your mobile and any other device you may use. E.g. hearing aids, wheelchairs etc. According to the info in the booklet, you should check your kit about every six months to a year. That’s also where it falls down for me as these sorts of things are the things I forget. You may want to put it in your phone so you remember.


Another good resource to use when thinking about what to put in a kit comes from here.

Be Informed


It seems obvious; but many of us don’t think to use “Old Fashioned” methods of communication like radios. We rely so heavily on things like the internet that we don’t think about other media. Another thing is that radios don’t necessarily require electricity. (Make sure you buy a battery powered one and spare batteries.) They’re as up-to-date as any website (if not more) and they’re not reliant on electricity or phone lines.

Follow Orders


We have all heard the coverage in the media from authorities saying that residents ignored warnings to evacuate. We love our bloggers very much and want them to continue to read our excellent posts, so please DO AS YOU’RE ASKED!!! If police, SES or other authorities ask you to evacuate, do so. If they ask you to stay, also please do so. (Make sure if you can ahead of time that you have your emergency kit ready.)

Tuesday, January 11, 2011

Disability + Pregnancy

I have heard many women talk about becoming “public property” when they are pregnant. Total strangers like to pat a pregnant belly and ask the gender of the baby, food and drink choices are scrutinised. In short, everybody has an opinion about everything and they don’t mind sharing it!

What happens if you add “disability” to pregnancy? And “disability” to parenting?

From my experiences as a worker and from listening to the stories of parents with disability, it seems to me that if you are a parent or expectant parent with disability you can expect at least a double whammy of the usual public scrutiny.

Judith, a parent with a physical disability, asks “why do people have such a hard time dealing with disability and pregnancy together? Is it because the disabled as a group are seen as asexual or childlike and are thus not supposed to reproduce? Is it because people are afraid we are irresponsible and unable to care for our children properly? Or is it because people are afraid our children will also be disabled and will add to the burden we already place on society?”

Anecdotally it seems that it’s not just total strangers who question the ability or right of people with disability to become parents.

Trish Day created the website disabledparents.net after she had a range of interesting experiences during her first pregnancy. Trish says “the few people I had met who were parents with disabilities warned me. They all told me that many people in our society have definite opinions about people with disabilities becoming parents. They said that total strangers would accost me and tell me that I had no business being a mother. I spent many months planning how I would respond to these people, but each incident that happened wasn't on the list of what I expected. I never knew quite how to respond. One day, a co-worker, who I'm sure didn't mean to offend me, said, "I'd like to see how you're going to take care of a baby!" I can't remember what I said, but I remember thinking to myself, "I'd like to see that, too!" Growing up disabled, my parents sheltered me, and I never had the opportunity to take care of a baby. I helped with changing a diaper once when I was 10, but was never left alone with a baby in my life. I didn't know how to lift a baby or feed one, and I didn't and I didn't know anything about feeding and dressing. I went back to my desk in a panic.

As I sat at my desk, I realized that no baby is born holding an instruction book. Thank goodness for that; I could make up my own rules as I went along, and if I were lucky, the baby wouldn't notice that I was different. Maybe the baby wouldn't notice that I was doing things differently because he or she wouldn't know any other way. A similar philosophy has guided me through my life as a disabled person. If I've never experienced the things that the rest of the world thinks I'm missing, then, in my own way, I am "normal," whatever that is. So maybe the same approach would work for baby; at least I was hoping so.”

I love Trish’s approach and I think she hits the nail on the head when she says that no baby is born with an instruction book. I figure that most new parents have to do their best and make it up as they go along, disability or no disability.

Disabledparents.net also describes some of the equipment related challenges of parenting with a physical disability, along with suggestions, solutions and advice about equipment providers. Reading about modifications made me think about other uncommon baby products, for example prams for triplets. According to Hellin’s Law only 0.013% of births are triplet births, yet with a simple Google search or a trip to Babies R Us you can view or obtain information about a range of appropriate prams and joggers. Statistics on the prevalence of physical disability vary, but in Australia it seems that somewhere between 10 – 15% of our population identify as having a physical disability. Of course not all of these people are parents or intent to become parents, but even so, you’d think there would be a big market for modified baby equipment. So why is it easier to find a triplet pram than a modified pram for wheelchair users?

Are you a parent with disability? Or a person with disability who looks forward to having kids in the future? What is the best way to overcome the frustrations and challenges of negative public perception?

Thursday, January 6, 2011

Weddings and Wheelchairs



When I was planning my own wedding I used to read a blog called Offbeat Bride, and one of the first things I noticed was the diversity of "brides" (and very offbeat weddings!) featured. With my wedding anniversary coming up, and plans to attend the wedding of a very dear friend this weekend I definitely have weddings on my mind, and I remembered reading a series of excellent posts about wheelchairs and weddings.

Some posts focus on brides and grooms who use wheelchairs, for example this post in which a reader seeks advice about her upcoming wedding:

I'm a bride who's disabled (I don't want to say I'm CONFINED to a wheelchair, but I do need one when I don't feel like crawling on my hands and knees.) My experience as an oft-seated individual is that beautiful dresses don't have quite the same visual sweep on me as they do on someone standing up.



It's also my experience that it takes people a minute to notice that I've entered a room, because I'm just simply not at their eye-level. So I've never really been able to do any real entrance-making. How do I make a little drama when I go to walk down the aisle?


Also, what kind of gown would be visually stunning for a bride who's sitting on her ass? And is there a way to convey me down the aisle that makes it so I'm looking at my guests and not up at them? -Nicolette

The response comes from Andy, whose very very cool wedding was also featured on Offbeat Bride.  It's rare to see representations of beautiful, trendy, fashionable women who use wheelchairs. I love seeing a bride who "rocks a wheelchair" featured in popular media.

wedding24
Offbeat Bride also has a series of posts and links to other "disability friendly" weddings, most notably "a wheelie special wedding."

I'd be interested to hear your thoughts on the representation of people with disability in the media. Do you find the images of Andy's wedding as positive as I do?

*Photo Credits: Andy and Jeff's bright green and design detailed wedding, from Offbeat Bride

Wednesday, January 5, 2011

Slayer Wheels

Today's post is written by Alex Cochran, founder of Australian company Slayer Wheels. I think you'll be interested in the story behind a fabulous new concept and company. You can find Slayer Wheels on the web at www.slayerwheels.com 

Alex Cochran

We had it all organized. After a leisurely sleep in, Desiree and I would hit the laneways of Melbourne to do a bit of window shopping and some serious latte consumption. We had been spending a few days in one of Melbourne’s boutique hotels after attending a wedding.



Desiree had been complaining of a headache the night before, but this was nothing really unusual. It was 8.30am when we woke. Desiree was not her normal self; it was then that she said she was blind in her right eye. I took a look and there was no blink response. She walked to the small ensuite bathroom we had, and then buckled to her knees. I rang reception for an ambulance and in no time we were in the emergency intensive care unit of Royal Melbourne Hospital.


I knew deep down that the symptoms Desiree displayed were classic stroke symptoms. But she was young! Surely she couldn’t have had a stroke.


It was confirmed, Desiree had suffered a significant “cerebrovascular accident” as the doctors called it. The next 3-4 days would be critical. No one would confirm for me that she would survive. The only comment I can remember well was one of the senior nurses saying to me, “You know, your life has changed forever”.


That was 5 years ago. Never a day goes by where I don’t recall those words. I was a senior executive of one of Australia’s leading retailers, living in Sydney, working 15 hour days and travelling the world developing products to sell on our shelves. How different my life is today.


Desiree did survive. After she was stabilized she spent 2 weeks in Royal Melbourne Hospital then was airlifted back to Sydney, our hometown, where she spent another 6 weeks in Royal North Shore Hospital and then another 6 months in Royal Ryde Rehabilitation Hospital. Over this time she progressively regained her speech, and most of her cognitive abilities. However she has never regained any movement in her left arm and only about 20% functionality of her left leg.


When it came to choosing a wheelchair Desiree wanted something that would express her personality. After all her wheelchair would become the first thing people would see. Her chair was now to be part of her life. We spent weeks looking at different chairs. Could we find a “fashionable” wheelchair? No way. It was as if once you became disabled you had to “check in your personality” at the door. The best we could do was a bright red Invacare Action 3 model. But this was far from any “fashion statement”. You could do so much more.


I made a decision at this point to research wheelchair design from the point of view of fashion. The more I read, the more that I became disillusioned. Over the last 20-30 years there had been a considerable amount of research into wheelchair wheel design and wheelchair handrim design. What this research had clinically proven is that changes to the design of wheelchair wheels and handrims can have an extremely positive effect on the long term quality of life of manual wheelchair users. But sadly very little of this design innovation had found its way into wheelchair wheel production.


I continued my research over the next few years and waited for an opportunity to bring these thoughts to reality. Just recently a long-time friend purchased a bicycle wheel building business and he was looking for new products to diversify the business. What better than wheelchair wheels!


Here was my opportunity. We could start a company that produced wheelchair wheels here in Australia. Not only would these wheels use design principals clinically proven to improve quality of life, but we could also inject a bit of fashion. So was born Slayer Wheels. (http://www.slayerwheels.com/ )


It is still early days and we are developing up our product range, but I think we are going to get there. We have convinced a manufacturer to make a range of coloured handrims, we have sourced a range of low weight rims and hubs (also in a range of colours) and we know we can build a better (and more fashionable) wheelchair wheel. We are now working on our pricing and production techniques to get the wheels to market at the lowest price we can.


Now we need to get the word out. Please visit our website at http://www.slayerwheels.com/ and look through our range.


To help us get the word out join our mailing list so we can keep you informed, but above all please “Like us on Facebook” by clicking the Like Button located on the bottom of any page.