Don’t Rush To Christmas

I am very happy to be able to offer our lovely readers a blog post from Rich Fabend, who's words have been very much missed over this time. As always, Rich is offering some of the most amazing stories and has shared them with our avid readers. I really enjoyed his piece below, it seems perfect for the time of the year and is really quite an amazing read! Please enjoy!

 

Rich Fabend

Before sending this blog to DisCo I went to Wikipedia and looked up holidays in Australia. I was quite surprised to find out there was no holiday similar to Thanksgiving which is celebrated in the United States as well as Canada. In the States Thanksgiving is celebrated on the third Thursday in November while in Canada it's celebrated on October 12. This could just be a lack of knowledge on my part and I think what I've written here can be appreciated by anyone without it having to be a special day.

Before Halloween my wife informed me that stores were already beginning to display Christmas items. We have yet to celebrate Thanksgiving and the majority of the advertisements on television are related to Christmas. I believe retailers are rushing us to Christmas to increase their chances to make a profit. I feel very strongly that the Thanksgiving holiday gives us an opportunity to realise how fortunate we really are. I tell people from the minute I had struck the bottom underwater I am one of the luckiest people in the world.

Travis Roy has said "There are times in our lives when we choose our challenges and other times when challenges simply choose us. It is what we do in the face of those challenges that defines who we are, and more importantly, who we can and will become." Years ago a psychiatrist asked me to identify as many positive things, as I could, that resulted from my accident. After a great deal of thought the only thing I could come up with was that I had met some wonderful people. As I think about the question today I realised that there are many things that I really do have to be thankful for. I have been given a second chance at life. (I had no pulse when I was brought on the beach). Marge, my wife of 46 years, and family have stood by me every step of the way. Everyday Marge goes out of her way to help me enjoy quality of life. My nurses are always willing to go the extra mile. I have many friends who give their time to help me do the activities I love. I have surprisingly good health. I have learned more about human nature and the power that exists within the human mind. I have wonderful memories that I am able to revisit. I have been able to continue being an educator and, I hope, help others to deal with the challenges they face. The kindness that is in others has become very evident to me. When we watch the news we often are led to believe that there is much evil in society in general but I know that is not true. Finally, even though I am in a chair I have much freedom and opportunity. So, don’t allow yourself to be rushed to Christmas without stopping to realise what you have to be thankful for.

I Love To Laugh

Emma Crees has been a writer for this blog for a while, but I have to say this has to be my favourite of her blog posts. I think that everyone should be able to laugh at themselves sometimes. I know that I do it. It is definetly a point of concern for people who do not have a disability about whether or not they can make a joke in relation to that person's disability, however it is common for someone to make a comment about somebody else because they have red hair, giant eyes or a big nose. Even today one of the people within the office who has vision impairment responded to the comment "You were standing right beside a fellow staff member and you didn't see her"....Her response was "I don't see anything!". If we can't crack a joke towards aspects of ourselves, then how can we truly ever be comfortable being who we are?

Please check out Emma's blog site at http://writerinawheelchair.blogspot.com.


Emma Crees

I make jokes about being disabled, and specifically about myself and my disability. It’s just what I do. I refuse to see being disabled as a bad thing and somethings just are funny. Other times it’s a case of if I didn’t laugh I’d cry and laughing is definitely more fun. People don’t always know how to react to the jokes, disability being such a serious and horrible thing that they don’t know if it’s ok for them to laugh. Or perhaps they just don’t expect it.

I’ve frequently made jokes about my chair. I’ve convinced people that I’m not disabled just lazy. And once that a miracle had occurred because I stood up. When I last had a blood test the nurse commented that my veins were moving. I said “well, at least part of me is.” I thought that was hilarious, she didn’t even smile.
I’m not the only person who jokes about their disability. I know a couple of others who do. I also know a few people who can’t or don’t joke about it. I respect that but for me I need to laugh. I’ve even got a few able-bodied friends who now make crip jokes to me. Usually with the comment “I know I can say this to you…”
I want to share a moment from this evening. I’m really hoping it isn’t one of those “you had to be there moments”. I was really amused by it anyway.
I take a creative writing class. It started again this evening for the new term so we had a few people who’ve been before and several new members. We were just getting started and the tutor made a comment that he thought we had everyone or at least he hoped so because we didn’t have enough chairs for anyone else.
Me being me I just sat there and cracked “maybe if someone else comes they’ll be as organised as I was and bring their own chair.”
And just as I said it the door opened and another wheelchair user came in.
That, my friends, is why I make crip jokes. Because once in a while something happens that just makes it even funnier. I can cope with my life and my disability? But a world or even a life without laughter? I couldn’t cope with that.

Out of the Mouths of Babes

Today I am offering you a posting from a regular guest blogger who we haven't actually heard from for a while. Emma Crees has always been an amazing blogger, wise with words and wise with thoughts. I really enjoyed her blog post today, it's quite interesting to realise how children see the world. I think this blog is one for mothers with a connection to disability, as we can all understand that sometimes the dandiest things come out of the mouth of a child. (Please check out Emma's blog site which has recently been renovated, at http://writerinawheelchair.blogspot.com.)  

Emma Crees

A good friend of mine has a four year old son. I’ve known her (and him!) since he was about 16 months old so he’s grown up knowing me.


I use a manual chair a lot of the time and that’s the chair I prefer. But I also don’t drive due to my CP (spatial awareness problems meant when I tried it wasn’t a good idea and I’ve never been back) so I have a powerchair as well which I use most of the time I’m out and about. R (my friend’s little boy) has seen me in both my chairs although I think he’s probably more used to my powerchair.

If you ask him about my powerchair, he’ll tell you it’s a wheelchair. He’ll also show you where the horn on it is and he frequently climbs up for hugs. But if you ask him what my manual chair is? That’s a wheelbarrow. He’s called it that several times even though we correct him whenever he does. It’s really cute and more than a little bit funny.

Then the other day I was talking to someone I volunteer with. She’d taken her granddaughter (I think she said she is 6) camping. Said granddaughter had been desperate for the loo so they’d parked in a disabled space. She said to me that there were about six free disabled spaces and it “wouldn’t matter” (I would have said something about that but you’ve got to pick your battles). Anyway, apparently she asked her granddaughter if she knew what disabled parking spaces were for or who disabled people are or some such, I forget exactly which. And she replied “those people who go round in wheelbarrows”.

I really, really love the way kids see disability and the way they react to it. It’s so refreshing. I wish more adults would take a lesson from their kids and realise that disability is different. But that’s not a big deal, it’s OK. Some do but not many.

And the “Wheelbarrow” comments I keep hearing about (if two kids saying it can be called keep hearing about) do amuse me and make me smile. I can’t remember the last time a TAB adults random disability comment made me smile and laugh like that. I wish I could.

Your home need not become your prison

I am very excited about the blog post that I can offer you today. I have made contact with a very inspirational and symbolic individual and have recieved permission to publish her amazing article here. I know that you will all know of her. Cynthia Banham is an Australian journalist that writes for the Sydney Morning Herald, and I believe some other publications on the occassion. Her role as a journalist and her great ability to source stories led her into a dangerous situation that left her with only half of one of her legs. In 2007 a plane crash occurred in Indonesia, claiming the lives of 21 individuals, including 5 Australians. An article described Banham's escape from the fires when she was "airlifted to Perth from Indonesia with back injuries and extensive burns to her lower body after a Garuda Boeing 737-400 plunged off a runway at Yogvakarta and caught fire..." The crash left Cynthia with a disability. However, Cynthia has really proven that one can achieve just as much no matter ones disability. Her future in journalism has been fabulous and she has sent article after article to the Australian population sharing her amazing experiences. One particular article struck my and most of Australia's eyes. From the permission of Cynthia herself and taken from SMH here is her article 'Your home need not become your prison'.

Cynthia Banham


You never plan for a life-changing injury. It's something you just hope never happens. Growing old is more of a certainty. But both events can have a profound impact on the way you feel about your home: a sanctuary, or a kind of prison.

I know this first-hand. Catastrophic injuries from a plane crash changed my world forever. If not for the efforts of a family friend, a builder who extensively modified my home while I was still in hospital, I would not have been able to get in the front door, let alone my kitchen or shower.

But what really came as a shock was the impact my injuries had on visiting family and friends. Dropping in for a meal or a cup of coffee, to stay connected to people, is essential to a person's mental well-being. Yet here I was, left in tears on a visit to my in-laws from the indignity of not being able to use their bathroom without help, unable to visit my parents' home where I'd grown up because I couldn't climb the stairs to their front door.

We have laws about accessibility standards in public spaces, but for private homes there are none and I never imagined this would change.

Then eight months ago Bill Shorten, the parliamentary secretary for disabilities, asked me to speak at a meeting he had organised, with Therese Rein as patron, for executives from the housing industry and the ageing, disability and community sectors, at Kirribilli House.

The subject was "universal design" - building a house to last its occupants' lifetimes so whatever happens, should they get injured or grow old, they will still be able to live independently.

If we introduced some minor, inexpensive changes to the way Australia builds homes - changes many times more expensive if done retrospectively - then no house need be a prison. Making houses accessible from the street or car park, slightly widening front doorways and passages, putting a toilet on the ground floor that could be used by someone with mobility issues.

I agreed, intrigued something could be done to improve the lives of 20 per cent of the Australian population with some kind of a disability, and encouraged this concept could have economic and social benefits for all.

Universal design ideas are already being implemented overseas, in Japan, Britain, Canada and Norway. They are gaining traction in Victoria.

What is the appeal? Like Australia, these places have ageing populations. Given the option, most would prefer to grow old in their own homes, retaining connections with family and social networks where they have spent their lives. But with the majority of homes, this is virtually impossible for older people with mobility issues.

It doesn't stop there. A house built for a lifetime would be easier for mothers with prams and people with temporary injuries.

I started out thinking it was an extremely lofty ambition to get this diverse group to agree there was a case for universal design in Australia. The Property Council of Australia, the Housing Industry Association, Master Builders Australia, the Australian Institute of Architects and the Human Rights Commission are unlikely allies.

But Shorten is a superb negotiator, and the determination he has shown over the past three years to fight for a better deal for some of the less lucky Australians is remarkable.

The final details are being nutted out, but soon this dialogue will deliver concrete proposals to the government. These professionals have surprised even themselves with their ability to reach common ground on an issue that for many will be life-changing, in a good way.

Critics might say they don't want to be told by governments how to build their homes, or they don't want to live in houses resembling hospitals. That's not what this is about. Making a doorway a few centimetres wider does not make a house more sterile, just more liveable.

Is it really that big an ask of Australians to give a damn about their fellow citizens with physical limitations, but still want to engage as fully in society as you, their friends, colleagues, families and neighbours?

You never know, one day you might just grow old.

The Story of Jason Ballerini

I have a real treat for the readers of this blog today. I was lucky enough to get a contribution from Jason Ballerini who is an inspiration and prime example of a strong person with a disability. Let him represent all those who are feeling like the challenge is too much. I think that his story really represents the common saying that you can do anything if you put your mind to it. He is truly fabulous and I am very happy to share with you his story!

Jason Ballerini

As a fit, active 16yr old, with my life ahead of me, social work or having a career in the disability sector were the last things on my mind. After a diving accident in 1996 left me a quadriplegic, not only did I lose the ability to walk, I felt as though all my options, dreams and aspirations washed away down that creek as well.

It was not long into my rehabilitation that I began to feel this passion inside of my stomach, the passion to overcome the social attitudes and barriers I was now facing. From that day on it was my mission to never let anything stop me from achieving what I wanted. Although motivated to achieve, I was still uncertain in what? It wasn’t until the last month of my rehab, my rehab lasted 4 months when I was told I’d be there for 8-10, that I realised a lot of the other patients were coming to me for advice, a chat or for guidance and hope. It was then I realised that social work, in particular, the disability sector was my calling.

After completing a bachelor of Social Work, I began working in the Disability Advocacy field. Through my experience, study and work I have had the opportunity to gain an understanding of the demands on the disability sector, but also to advance the rights of people with disabilities in our community. In trying to set an example that we are only limited by our own imagination and that the possibilities are endless to those who work hard to achieve their dreams.

Often we see people with disability who attempt to "pass" in the non- disabled world, who want nothing to do with disability groups, especially consumer-run groups. Of course people who have invisible disabilities are more able to hide their disabilities, if they choose to do so. It's a bit ridiculous for a wheelchair user like myself to consider hiding the fact.

But it leads me to wonder why I would want to. Why wouldn't I want people to know that I have a disability, that I accept it as part of who I am and that I am proud of who I am? Why wouldn't I want anyone to know that I confront physical and attitudinal barriers every day of my life and that I identify with strong individuals who are part of the disability rights movement?

I don't hide my disability and I don't "overcome" it either. It's just something I live with. I am not handicapped. Society is handicapped when it shuts out people like me. I am not physically challenged. Tri-athletes and mountain climbers are physically challenged. And I'm certainly no more differently- abled than anyone is from anyone else. No. I just simply have a disability. I don't deny it, or hide it.

Being "seen" as a person with a disability is a conscious choice, whether or not one's disability is visible. For the way others view us is closely connected with the way we view ourselves. Choosing to see disability as a part of who we are and recognise our strengths and abilities, is all part of a process. We need to recognise that having a disability is not a negative thing.

Looking back at the last 14yrs, I can acknowledge has been mighty tough, but it has also been the best 14yrs as well. I have grown so much, and the passion to succeed in this industry is as strong as ever. I have loved every minute of studying and working in this field, and the feeling of helping someone, advocating for change and changing attitudes and policy still drives me to get up every morning and go to work.

The Kindness of Strangers

As you are all aware, I have been spending quite a bit of time on Emma Crees's blog, indulging in her fantastic words about the experience of disability. This little blog post that she sent me for this blog is really quite moving and nice, representing those moments where humanity remembers you!!!!

Emma Crees

I’m sure a lot of disabled people have trouble with people on the street. Or maybe I’m wrong and it’s just me. It’s something I find quite hard to deal with at times.

The ones that mean well and you know they do but you just wish they’d leave you alone. You don’t want them just grabbing the back of your wheelchair and pushing. And don’t take over and pack my shopping for me. The reason why I’m in a wheelchair is none of your business. That sort of thing.

And then there’s the big one. When you’re just sitting there minding your own business perfectly fine, perfectly happy. And people come up and ask if you’re ok, do you need any help?
They wouldn’t do it to an able-bodied person would they? I always wonder and then decide that no they wouldn’t. So it annoys me that they do it to me. After all, if I needed help I’d ask. Leave me alone. Of course, I don’t say things like that I usually just mutter “no” or “I’m fine” and then ignore them.

Only… I’m having to change my mind about that sort of thing.

Several years ago a good friend and I went to London for the day. We took my manual chair and it broke whilst we were walking back to the station. Looking at it we were pretty sure if we got me standing up we might be able to do a temporary fix (which actually didn’t turn out to be the case). There were some railing I could lean on nearby but we couldn’t get me there easily. So we stopped a passer by and asked if she could help. She took one look at my wheelchair and just went “it’s broken” and walked off.

Last week my powerchair broke down in the middle of town. I was stranded by myself. It took quite a while for me to track down a family member to come rescue me and I did get hold of them for them to get to me.

Loads of people stopped and asked if I needed help. Even when my Mum was down with me they still stopped to ask. Before she got there two different sets of people spent a long time separately looking at my chair and trying to see if they could spot a problem.

I still think a lot of people on the street are rude and that they shouldn’t just help without asking. As for the questions, most of the time it’s wrong. But after what happened last week and remembering back to that day in London when we tried to get help and couldn’t? I’m trying to change my attitude about the people who mean well and offer unwanted help. Because I was very grateful for that help last week and it isn’t always there.

Sometimes, the kindness of strangers is a very good thing.