Tag Archives: personal carer

wheelchair Socks

Wheelchair Socks

Today, Dr. Eugene Emmer, owner of RehaDesign Wheelchair Accessories announced the launch of ‘Wheelchair Socks’ an innovative cover for wheelchair casters, the small front wheels on wheelchairs. The launch of Wheelchair Socks comes after years of requests from wheelchair users.

RehaDesign offers three types of wheelchair tire covers for manual wheelchairs. Wheelchair Slippers cover the big rear wheels. Mud Eaters also cover the rear wheels but are made from water resistant neoprene. The new product, Wheelchair Socks are the first covers designed for the small front casters.

Wheelchair Socks

Wheelchair Socks and Slippers

Wheelchair Socks and Slippers

Dr. Emmer said: “For a decade we have sold RehaDesign Wheelchair Slipper covers for rear wheelchair tires. Wheelchair users have told us that they appreciate that Wheelchair Slippers help to keep their floors clean from dirt and free from black tire marks. But for many years wheelchair users have demanded a solution for the front casters too. Until now, we have always given the disappointing answer that it was impossible to cover casters due to the way the caster is mounted on the wheelchair”.

Dr Emmer explained, “Last year after receiving an angry email from a disappointed customer who could not see the point of covering the back wheels and leaving the front wheels uncovered, I had a Eureka moment. In the middle of the night, I woke up and traced out a pattern for a new design. After a few modifications to the new design, ‘Wheelchair Socks’ were born. Wheelchair Socks require more precise and elaborate cutting and final sewing than Wheelchair Slippers do because they must fit the casters precisely. But like Wheelchair Slippers they solve the annoying problem that all wheelchair users have – they help keep floors and carpets clean and protected from damage. The impossible is now possible.”

Wheelchair Socks

Wheelchair Socks

Wheelchair Socks

When asked about the names “Wheelchair Slippers” and “Wheelchair Socks”, Dr Emmer explained: When able bodied people come home, many put on slippers or take off their shoes and wear socks in order to prevent tracking outside dirt and germs throughout the house. Now wheelchair users can use their Wheelchair Slippers and Wheelchair Socks in order to keep prevent tracking dirt and germs throughout the house. In addition, Wheelchair Socks and Wheelchair Slippers will help prevent damage and tire marks to floors and carpets.

Like Wheelchair Slippers, Wheelchair Socks feature a special fabric with a lining that grips to the wheels to prevent slippage. The new specially designed closure makes it possible for wheelchair users to quickly cover the caster wheels while sitting inside or outside of the wheelchair. Like Wheelchair Slippers, Wheelchair Socks are machine washable. Wheelchair Socks’ unique design is pending patent approval in the USA and is now being submitted in several other countries.

About RehaDesign Wheelchair Accessories

RehaDesign is an innovative brand of wheelchair accessories, designed in Europe but distributed worldwide via the www.RehaDesign.com website, Amazon and via a network of independent dealers. Wheelchair dealers interested in joining the RehaDesign network are encouraged to contact Dr. Emmer for more information.

Resources

Loving Somebody Extraordinary

It was September 24th 2006 when my path crossed with my soul mate. At 35 I had all but lost faith in eligible men and monogamous relationships, never mind conventional marriage. There he was sitting in the only patch of sun at a Bar-B-Que and I couldn’t resist joining him to soak up the warmth. I had just given up alcohol for good, and offered him a taste of my ginger beer. His cousin, our neighbour of 34 years, was having a farewell BBQ and Francois almost didn’t come. Meeting Francois changed my life forever. 

Loving Somebody Extraordinary

Loving Somebody Extraordinary

Francois is a wiz on computers and online games. At the time he was busy with Lineage II. He explained how he was able to gather with other online gamers across the world to arrange sieges, defend castles and fend off fierce dragons. He called himself a “lowly warrior”. I have since discovered he is more likely a Knight. With many of his fellow swordsmen being North Americans, most of the online battles were scheduled for 4am. This was no trouble for Francois and he would be awake and ready to support his guild. 

His lifestyle was akin to that of a vampire, drawing the thick curtains during daylight so the glare wouldn’t reflect off the graphics, and awake all night to battle. He fought with pride, honour and dignity, and this seemed to mirror his inner core. Francois was clearly a gentleman who encompassed good old fashioned chivalry. He also has a deep understanding of human nature, and a permanent good humour. These are rare and precious qualities that were obviously enhanced through his disability. Francois has a level C5-6 spinal cord injury (SCI) and is completely paralysed from his chest down to his feet. He has partial movement of his upper arms running down into wrist extension, but sadly it stops short of hand and finger movement. 

At 5:20pm on a warm Monday afternoon in 1992, a car drove into Francois flinging him off his motorcycle and breaking his neck. What would you do if you could alter 10 minutes in your lifetime? He was 18 years old and had just started working. He spent six months at the Conradie Rehabilitation Centre for spinal cord injuries where he recovered and was taught how to adapt to his new life. The first three months were spent in a head brace which was fastened tightly to prevent any movement at all so that the bones in his neck could fuse. They didn’t realize that his scapula was broken, and the pressure of the brace against his shoulder was agonizing. The pain in his shoulder restricts pushing his wheelchair to this day. Suddenly lying on your back with no sensation and no movement in your entire body is a life sentence that one cannot compare to anything. It’s unthinkable. 

The ward was full of men forced to come to terms with their injuries. They developed an unspoken bond and deep understanding that would resurface years later when they bumped into each other again. Every three hours they were turned to prevent pressure sores, which meant a peaceful night’s sleep was impossible. Pressure sores are one of the worst afflictions of paralysis. They develop too easily from lack of blood circulation, mostly from a hip or bony extrusion pressing for too long on a surface. Being paralysed means not being able to feel anything below the level of the break, and often a pressure sore can go unnoticed until it’s very serious. Tragically, two thirds of people with a spinal cord injury suffer chronic, intractable pain in those areas where there is sensation. A “complete break” is when the nerve has been completely severed, whereas an “incomplete break” means there is still some connection and some level of recovery.

God’s miracle of creation is clearly evident in how the organs of the body know their respective tasks and carry on as per normal. Bladders and bowels still need to be emptied. This is one of the biggest hurdles that a paralysed person faces, how to manage their bowel routine and to retain some sort of dignity. Did you know that it’s impossible to cough without chest muscles? This change’s the dynamics of catching a simple cold for fear that it may become bronchitis. I certainly didn’t know. I knew virtually nothing about paralysis when I met Francois. But I was willing to learn one day at a time in order to spend time with him. I laughed more than I had in years, life had become adventurous and fun, I had found my very own Mr Bean and perfectly preserved Peter Pan rolled into one. 

Francois enjoys the view from his wheechair in Knynsa

Francois enjoys the view from his wheechair in Knynsa

Our first date was a drive to Ceres, stopping at Bainskloof pass for a picnic. It would be his first picnic in 15 years. Imagine not doing things for 15 years, not going to the movies, not believing you could have a loving partner or a normal life. It was a first of many more firsts to follow. But that picnic was our very first time and we hadn’t yet figured out the do’s and don’ts. That day I burnt his hand with a hot coffee cup (he still has a small scar); he developed the start of a pressure sore sitting on a hard car seat; and he got a bladder infection from an overfull legbag that he didn’t want to ask me to empty. It was love. And the physical attraction was undeniable. He had a twinkle in his gorgeous blue eyes that made my heart skip a beat. 

We both knew from the beginning that we had found the love we had once believed in. I had travelled around the world and found the centre of my universe on my doorstep. We used to play together as carefree children. Francois proposed to me on 7/7/2007 during a weekend away at Cape Agulhas. Our friends and family joined in an awesome engagement celebration at Wiesenhof, in the heart of nature. We had a BBQ at the lapa overlooking the dam, with each guest receiving a straw sunhat as a special memento.

Computer keyboard typing splint

Computer keyboard typing splint

Soon after we met, Francois embarked on an arduous journey of studying IT through UNISA. It’s a four year course that he has immersed himself into, determined to make a success. He has been richly rewarded with distinctions for almost all of his subjects. It’s a tremendous achievement, especially given the technical difficulties involved for him to study and write his exams. He is fortunately able to operate a computer easily with the aid of a typing stick. In fact, with another set of helping hands he has built all his own computers. However, a textbook poses much more of a challenge. To handle a book and turn pages without the use of hands and fingers is no easy feat.

Here Francois’ mother deserves a special mention, as she tirelessly assists him with his studies as his caregiver. The first examination that Francois wrote was nail-biting. Other students are able to write exams but Francois needs a computer to type on. They had designated a computer at the back of the normal exam venue upstairs. On that particular day the lifts were out of order. Mayhem and panic followed. They contemplated carrying Francois upstairs, but this was too daunting and dangerous.

The library was downstairs and they ended up using one of the quiet audio-visual rooms, make-shifting a desk for him. Telephone books were cleverly placed underneath to raise the level of the desk to the height of his wheelchair. Another desk was placed alongside for Francois to be able to lean on. Without him having stomach muscles he is unable to balance, so without support he would topple over. I’m not sure if he would fare well on a boat, it’s an adventure we’re still to try. Lastly, he brings his own keyboard and mouse for ease of use. This was to become Francois’ examination venue thereafter. A few years on, Johan Jacobs, the Deputy Director at UNISA, specially designed motorised adjustable desks suitable for people with any sized wheelchair, and purchased state-of-the art computers for people with any type of disability.

Each exam has had its own set of challenges. Once, Francois had to re-write his exams. It was a very bleak day indeed. As Francois was finishing up and preparing to print, MS Word froze and all his answers were corrupted. That day Francois and his invigilator sat for seven hours straight as he diligently rewrote the entire paper. Tricky too is when questions require him to draw a technical diagram, which he cannot do. This can be beyond frustrating. Frustration is the number one stumbling block. Able bodied people are able to go for a walk, go for a drive, do something else to release our pent-up frustration. How does a paralysed person handle the many frustrations that he encounters? Francois remains sane with an insane sense of humour.

It’s a daily reminder for me to be ever-grateful that I am physically able to get out of bed, take a shower, hop into the car and drive to work. The simple everyday things that we take for granted are actually the greatest gifts in life. Francois is unable to cross a road on his own because of the pavements. It takes a minimum of two hours to get us both ready in the mornings. All routine tasks take thrice as much time and effort.

Going out can become emotionally draining when things go wrong: if the legbag leaks and floods the shoe with urine; not being able to find parking in a designated wheelchair bay; no room for the wheelchair next to the car, a small oversight in some parking areas; the catheter not draining properly (this is life-threatening if not fixed in time); extreme hot or cold weather (quadriplegics don’t have normal temperature regulating bodily functions); transferring into or out of the car in rain where everything plus the wheelchair cushion gets wet. Yet after the rain there is always a rainbow. We had a magical wedding on 4/4/2009, it was a dream come true. The love and support from our family and friends was phenomenal. This was topped by the best adventure we’d ever had, a honeymoon in Kruger National Park.

Travelling-wheelie-Wall-E

Travelling companion Wall-E

Wall-E was our travelling companion, a young fluffy lion with wild hair and an eagerness to see untouched nature. Kruger is well equipped for wheelchairs, and each of the five parks we stayed in had designated bungalows that were wheelchair friendly. Though being wheelchair friendly doesn’t necessarily mean being quadriplegic-friendly. On two of the balconies I almost lost Francois as he went flying down a ramp that was too steep, once backwards! He also burnt his hand quite severely while tending to the fire one windy evening. We had duct-taped a long two-prong fork to his hand so that he could turn the meat. He is unable to feel heat on his hand and the fire must have been hotter than we realized.

 We both tend to put on our McGyver caps when trying to find clever ways of doing everyday things. Great successes are duct-taping a table-tennis bat to his hand, putting non-slip handgrips onto everything, which has amongst other things brought out the chef in him. Along our travels we were privileged to find QAWC (QuadPara Association of Western Cape) through which we have met so many other people in a similar situation as us. Some were recovering at Conradie at the same time as Francois, cementing strong friendships. They don’t let adversity hold them back. It is fascinating to observe how everyone finds ingenious ways of doing things. It is just a lot harder to physically do everyday things, and a person’s potential is dependent on their environment and support base. Which is why it’s uplifting when total strangers offer their help. On a particularly interesting day at the World of Birds, a steep pathway had become damp and slippery. We were stuck. Out of the blue a strong set of arms enveloped my shoulders and helped me push the wheelchair. It’s these moments that live forever.

Christopher Reeve named his first book “Still Me”. He was still the same person inside, regardless of his physical condition and appearance. He was still the same person, yet even better in many ways. As was Francois, he most likely developed a bucket load of patience, a deeper level of understanding, and an enhanced emotional intelligence* after his accident. Chris used his fortune and misfortune to encourage researchers to find cures and a better quality of life for paralysis victims. Chris’ work and legacy is paying off. Recently a paralysed victim of a car accident, Rob Summers, has been able to move again through ground-breaking electrical nerve stimulation. Although still early days, it pays homage to the title of Christopher Reeve’s second book, “Nothing is Impossible”

Jessica

Changing Supra Pubic Catheters

Changing Supra Pubic Catheters

It is important to use a sterile technique when changing supra pubic catheters. It is also a good idea to watch a doctor or nurse perform a supra pubic catheter change before you attempt to do your first one. Check that the old and new catheters are the same size. Look for matching numbers eg: 18fr and that the catheter port ring colors match. A supra pubic catheter change of different sizes should only be performed in a hospital by qualified medical staff.

Why and how often to change a supra pubic catheter depends on the user and catheter type. Catheters are durable but they do not last forever. The longer a catheter is left in the more chance of infection, blockage, sticking and other problems. Depending on the type of catheter, they have a shelf life of several years and use life of one to three months max. Silicone Foley and silver coated catheters may be changed every 3 months. Check the catheter packaging for details.

Changing Supra Pubic Catheters Silicone Foley

NOTE: I take no responsibility for how you use or misuse these guides or any problems that may result from that use. Many have asked me things about changing supra pubic catheters. This is only my personal experience (and explanations). In an emergency such as a blocked catheter call an emergency service! In the event that is not possible and the situation is life threatening, here is a quick emergency 3 step guide to changing supra pubic catheters. You can do this in a seated position or laying flat. Please only attempt this if you have already called emergency services and you are really, really desperate.

3 Step Emergency Supra Pubic Catheter Change

  1. Plug a 10cc syringe onto the old catheter port and deflate the catheter balloon.
  2. Remove the old catheter and insert the new one as far in as the old one was.
  3. Plug the 10cc syringe onto the new catheter port and inflate the balloon.

I have had to do this and survived. Sterility comes second in an emergency. Your first supra pubic catheter change should be done by a doctor or a nurse six weeks after install.

10 Step Easy Safe Supra Pubic Catheter Change

Catheter Change Equipment:

  • Catheter change pack (often these include all below but the new catheter and drain bag).
  • Lubricant (to lessen the pain and ease the new catheter in).
  • New sterile catheter of appropriate size (to replace the old catheter).
  • New drainage bag (don’t plug a dirty drain bag onto a sterile catheter).
  • Pair of sterile gloves (to avoid infection).
  • Sterile saline or water (to inflate the catheter balloon).
  • Two 10cc syringes (one to deflate and one inflate the balloon).

Catheter Change Method:

Have the supra pubic catheter user take a big drink of water and lay face up. Thoroughly wash your hands and forearms, remove any dressing, and clean around the supra pubic catheter site. Prepare your workspace. Then take a deep breath and try to relax. We know it can be a daunting task. My mother has been changing supra pubic catheters for years. My beautiful Mum has done 100’s of catheter changes for me and still gets nervous every time I ask her too. I love you Mum.

Caution: When changing supra pubic catheters note how far the old one was inserted. This is where most people go wrong. I have bleed from the penis for days because a new catheter was pushed in to far. On two occasions at the hands of doctors who failed to make this vital observation. You can mark the old catheter with a pen or clip something onto it near the skins surface prior to removal if you wish.

  1. Using a sterile method open out your catheter change pack and check for or add; a new sterile catheter (open the packet dropping the catheter onto your sterile field), two 10cc syringes, sterile saline or water, a sterile lubricant and gloves.
  2. Wash your hands and forearms thoroughly and dry with a clean dry towel.
  3. Using a sterile technique put the gloves on.
  4. Open the lubricant and apply it liberally to the first two inches of the catheter tip (that is the pointy end where the eyelets are).
  5. Fill one 10cc syringe with 8cc of saline (or clean water) and plug it firmly onto the new catheter port (where the colored ring is, you may test inflate the balloon at this point if you wish, but don’t waste time).
  6. Plug the second empty 10cc syringe onto the old catheter port and draw back on it to deflate the balloon (it may have less than 8cc). Remove the catheter (you may feel some mild resistance. If you are sure the balloon is fully deflated, it’s alright to give it a little tug). 
  7. As you withdraw the old catheter it is VERY important to note how far in it was. Also note, your hands are now no longer sterile.
  8. Pick up the pre-lubricated catheter and insert it. Only push it in as far as the previous catheter was (if you insert it too far it may go into a ureter or the urethra).
  9. A little bleeding is common after changing supra pubic catheters. If some urine starts to flow it usually means you have the catheter in the correct position. Keep holding the catheter in position and slowly inflate the balloon with 8cc of sterile water. Once the syringe is empty unplug it from the catheter port.
  10. Attach a new clean drainage bag.

Congratulations you are done.

Tips on Changing Supra Pubic Catheters

  • A quick change is a good change.
  • Using a topical numbing gel around the catheter site prior to change to help ease pain.
  • Sterilize water by boiling and set aside until cool.
  • Do not leave a person alone after changing supra pubic catheters. Watch for any bleeding or adverse reactions.
  • A few blood clots in the tubing are common. If it lasts for more than a few hours something may be wrong.
  • Some bleeding is common after changing supra pubic catheters. If it lasts for more than an hour something is likely to be wrong.
  • Profuse bleeding at the site, in the tube, or from anywhere else is not common. If it lasts for more than five minutes something is terribly wrong. Call a doctor.
  • Check, and if needed top up the amount of fluid in a catheter balloon every four weeks.
  • Never leave a supra pubic catheter out for more than a few minutes.
  • Never cut a catheter trying to release it.

Resources

 

NDIS SIA 6 Supporters

NDIS Six Reasons to Support a National Disability Insurance Scheme

Media Release: Powerful National Disability Insurance Scheme (NDIS) video demonstrates the daily disasters faced in the disability sector.

Graham Streets is one of six people to star in a YouTube campaign calling for the Federal Government to implement a National Disability Insurance Scheme (NDIS). The short video, titled Why the Spinal Injuries Association supports an NDIS, was released last week on YouTube.

In the YouTube campaign, Graham shares how his spinal cord injury has taken a life-long effect on his health. He now weighs just 45 kilograms.

People with permanent, physical disabilities in Australia are really struggling. There are not enough appropriate supports and services in place to allow people to get back into the community and contribute to society. At the moment I can only afford to have my carer help me out of bed in the morning and back into bed at night, so it’s pretty tough going for me during the day. I don’t get to have any lunch. — Graham Streets

Spinal Injuries Association CEO Mark Henley said as well as Graham’s story, the video also highlighted the challenges faced by four other members of the organisation and a member’s mother, who has been caring for her son for the past 35 years. These people also stated how an NDIS would improve their quality of life.

While many of our members and clients lead productive, fulfilling lives, too many are in crisis and it’s time for much-needed change. With the Productivity Commission handing down its final report into an NDIS on 31 July, we need as many people as possible to view our video and sign the online petition for an NDIS at www.spinal.com.au/ndis. People power can really make a difference – it could transform the lives of people with disabilities and those that often support them – their family and loved ones. — Mark Henley

Mark said recent figures from National Disability Services showed that if just 2% of people with a disability had appropriate support and could come off the pension and return to work, there would be a $2.5 billion injection into the economy.

An NDIS wouldn’t just signal major social reform, it also makes good, economic sense. — Mark Henely

Graham, who sustained quadriplegia in a motorcycle accident in 16 years ago, said the key recommendations in the Productivity Commission’s draft report, which was released on 28 February, further highlighted the dire need for an NDIS.

Currently, 1.4 million Australians have a serious disability, and unfortunately, a disability can be sustained in an instant. By 2030, there will be around 2.9 million people with a serious disability in this country. On top of those numbers, consider the family and friends who are often providing personal care to people with disabilities and it highlights the enormity of the issue. — Graham Streets

If implemented, a National Disability Insurance Scheme (NDIS) would begin in stages from January 2014. It would provide appropriate financial support for people with physical disabilities sustained either at birth (for example, cerebral palsy) or at any stage during their life (for example, a spinal cord injury).

This support would allow people to fund their personal care needs, therapy, aids and equipment, home modifications, and employment training, — expenses that they now have to pay for on top of their everyday — living expenses that all Australians face.

Spinal Injuries AssociationNDIS Website

The Spinal Injuries Association supports and empowers 2,000 Queenslanders who have spinal cord injuries. For more information on the organisation, please visit www.spinal.com.au or www.everyaustraliancounts.com.au for more NDIS information.

Resources

Phoenix Radio Live Online SCI Interview

Phoenix Radio SCI Interview

Phoenix Radio Episode:

Date: 28.01.2011 Time: 2.07pm (double segment).

Interview

Graham Streets talking on life with a spinal cord injury.

Presenters

Simon Baker and Suzanne.

Click the image below to stream interview audio.

Transcript

  • Simon: We have our next guest on the phone there. Graham Streets is an enterprising man who has experienced some setbacks in life. Graham had to struggle to get anything he has after a motorbike accident in 1994 saw him become a quadriplegic. He had his own electrical contracting business and things were busy but pretty good. Graham had to struggle to get everything he has since he was a sole driver of a vehicle in Queensland and there is no insurance for the driver in a single vehicle accident. Graham is on the phone to tell us about his struggle and what he is doing to get things changed. Welcome to the program Graham.
     
  • Graham: Thankyou.
     
  • Simon: Graham, let’s start by telling us about your experience of the legal side of your case as far as your application for compensation and what your lawyer advised you?
     
  • Graham: Currently in Queensland there is no automatic financial cover for people injured in a single vehicle accident as you mentioned. On the Gateway Arterial Highway where I had my motorcycle accident the corner was poorly constructed. Several people had lost their life on this corner. When looking into compensation I was told I had a good chance of winning several million dollars, that it would cost around a million dollars to launch such a law suit against the Department of Main Roads. My lawyers weren’t willing to risk fronting that kind of money and I didn’t have it.
     
  • Simon: Suzanne, you’ve got the next question…
     
  • Suzanne: What did this mean for you and your business?
     
  • Graham: After 11 months of recovery and rehabilitation in the Princess Alexandra Hospital, I was unable to continue working, my electrical business pretty much folded. I sold off some stock and gave most tools and equipment to friends in the trade.
     
  • Suzanne: This placed a lot of burden on your family?
     
  • Graham: Yes, for most people with a disability support and assistance comes mainly from family and friends. A spinal cord injury like any disability is not only a difficult time for the person who receives the injury. Often family and friends also struggle and the emotional and financial burdens can be massive. I had few options but to move back in with my aging parents with my Mother as my primary carer. Instead of me looking after them in their retirement years they were having to look after me again at their own cost.
     
  • Suzanne: Is there any funding available for you to apply through the State Government for personal carers?
     
  • Graham: There was and there currently is, however these waiting lists are long and many languish on them for years and years, only a small percentage secure that kind of permanent funding.
     
  • Suzanne: Graham, tell us about your mobility please?
     
  • Graham: I’m a C4 quadriplegic. I rely on a power-chair and require assistance with getting into and out of bed, showering, meal preparation, basically a fairly high level of personal care needs.
     
  • Suzanne: Tell us about your time in Rehabilitation and did you meet people with similar issues to your own?
     
  • Graham: Yes, as they say there’s always someone worse off and that can help acceptance of a disability through rehabilitation and while counselors and such are great, talking with others who actually are going through the same problems, and facing the same day-to-day issues as you is a great comfort as well.
     
  • Simon: You’re with Suzanne and Simon this afternoon and you’re listening to Ipswich Connections on Phoenix Radio online. We are going to have a quick music break and when we come back in a few minutes we’ll continue talking with Graham and we’re going to talk about life with a spinal injury and we might cover a couple of other things.

Music Break

  • Simon: Welcome back to Ipswich Connections. A radio program committed to giving people with disabilities a voice. You’re listening to Phoenix Radio online. This program is supported by University of Southern Queensland and Cerebral Palsy League of Queensland. We are talking with Graham Streets who became a quadriplegic back in 1994 from a motor vehicle accident. Graham, so what’s the one thing that is missing for you to have a relatively normal life?
     
  • Graham: Simon, I’d have to say the ability to drive is something I miss terribly. Getting around to see friends, getting re-connected in the local community, without having to rely on maxi taxis and that sort of thing. It can get quite expensive, public transport and getting around that way.
     
  • Simon: Yes and the fact, because you have to rely on public transport, it’s not always there when you want it. They get delayed through obviously no fault of their own, it’s just the nature of the work that they do too.
     
  • Graham: Yes exactly, it also makes it hard in that respect to hold down a full time job.
     
  • Simon: Yes, Yes that’s right. Okay, Suzanne…
     
  • Suzanne: What did Australian’s disability support system do for you?
     
  • Graham: Suzanne, I was able to receive a disability support pension and after eight years on a constant battle and struggle to get where I am today, the Queensland Department of Housing supplied me with housing, and I have permanently funded carers who assist me into and out of bed morning and night. I’m one of the lucky ones really.
     
  • Suzanne: Did you trial any respite centres?
     
  • Graham: There’s a fantastic four bed respite centre in Petrie called Backstop House, they take four wheelchair bound people at one time. It’s a great temporary break for my parents.
  • Suzanne: What needs to be done to change the laws?
     
  • Graham: Currently there’s a big push to bring in a scheme called NDIS, a National Disability Insurance Scheme.
     
  • Simon: Yes and with that, it’s a no-fault scheme where it doesn’t matter how you acquired your disability, you’ll always have the support that’s needed.
     
  • Graham: Yes it’ll be a great safety net whether you’re born with, or acquire a disability be it spinal cord injury, or any kind of disability later in life.
     
  • Suzanne: Is this the same throughout the whole country?
     
  • Graham: Yes it would be a nation-wide scheme that will automatically cover all Australian residents.
     
  • Suzanne: I believe you have developed some new skills and are now employed?
     
  • Graham: Yes, I currently work from home part-time as an accountant and I also do a bit of web design and I’m a webmaster.
     
  • Simon: So give yourself a plug, tell the people how to get in contact with you.
     
  • Graham: Well, my domain name is streetsie.com
     
  • Simon: Graham, we certainly wish you all the best and if you’ve got something happening there please drop us a line, give us a call, say hello, don’t be a stranger, and we’ll certainly be talking to you again sometime in the future.
     
  • Graham: Thankyou for your time Simon and Suzanne.
     
  • Simon: That was Graham Streets talking on his life with a spinal injury and what needs to be done to see that others in severe cases when you acquire a severe disability you have some opportunities there with the NDIS scheme that’s coming in. Thankyou very much for listening in today. You’re listening to Ipswich Connections on Phoenix Radio, supported by USQ, and our program Ipswich Connections is with the Cerebral Palsy League.

Resources

Laura Hershey Activist

Media Driven Disability Stereotypes

This November, Laura Hershey (1962-2010), MFA, disability activist, writer, poet, passed away from a sudden illness aged 48. Based in Colorado she is the author of Survival Strategies for Going Abroad: A Guide for People with Disabilities, a 2005 book offering stories and advice on international travel, published by Mobility International US. Laura Hershey is widely recognized for her organized protests against media driven disability stereotypes including the opinionated Jerry Lewis during his yearly Muscular Dystrophy Association (MDA) fundraising telethons. As a youngster, Hershey herself had been chosen as an MDA telethon “poster child.”

For many years, Laura Hershey argued Lewis’ yearly parading of his “pitiful, helpless cripples” in need of donations was demeaning and his portrayal of their existence as lives not worth living was offensive. When confronted, Lewis responded “…if you don’t want to be pitied for being a cripple in a wheelchair, don’t come out of the house.”

On another occasion, Lewis was asked what he himself would do if diagnosed with Muscular Dystrophy, the performer responded, “…I’d just have to learn to try to be good at being half a person.”  Based on the revenue brought in from Lewis’ MDA telethons, the agencies’ administrators are reluctant to correct Lewis’ frequent discriminatory statements. MDA officials fail to acknowledge people making donations totaling millions of dollars form negative and stereotypical opinions of people with disabilities from Jerry Lewis and those who enable him.

Laura Hershey Activist

Second from left Laura Hershey the activist protesting for better in home care

Imprinting Stereotypes On Children

Constantly bombarded with dysfunctional comments, questions and mis-representations through mainstream forms of media children as young as three (3) years of age, are able to acquire stereotypical beliefs and adopt negative prejudicial attitudes from their environment. Not understanding the true consequences at the time as these children grow, form friendships and groups, they exhibit negative behavior toward indifference, “outsiders” they have been socialized against.

Children given exposure to cultures outside their own, accepting of gender differentials and families dissimilar to their own dynamic, greatly reduces the inception of stereotypical behavior. Children raised in open tolerant family homes with stability and loving support, where acceptance and punishment is not harsh nor violent, prove more able to achieve in all aspects of life. The question is why would a parent not want this for their child.

Omission Perpetuating Disability Barriers

It is not a parental or media right to incite intolerance of people with a disability. One third of the population has or cares for someone with a disability. These are the people who strive to make life easier for all. If a tetraplegic with spinal cord injury for example can access a bus in their wheelchair you can rest assured a fully able bodied person can easily access.

All to often media reinforce and perpetuate negative bias simply by omission. Western culture emphasizes highly sexualized aesthetic beauty. The  predominant image of an ideal lover in popular culture excludes men and women with disabilities. Seldom acknowledged is the beauty and vitality that comes with a disability and even more rare the portrayal as attractive parental and sexual beings.

Persons with disabilities appear to be considered by media as invisible despite the reality that a significant proportion of the universal population has a physical or intellectual disability. Recent surveys from the World Health Organization have determined individuals with some form of disability account for the world’s largest minority: 650 million or 10% of the population. That is exclusive of the, “emotionally crippled” in true Jerry Lewis style.

Conclusions

Media will continue to present skewed, stigmatized representations of people with disabilities, perpetrating stereotypes. Misinformed is no excuse for ignorance. That is not to say all media coverage discriminates against disability. Prejudice against disabilities and sociological notions relegating the disabled body as something to be hidden are slowly changing.

Laura Hershey and her daughter

Laura Hershey and her daughter

With her untimely death, Laura Hershey leaves her partner to raise their young daughter alone. Hopefully by the time Ms. Hershey’s daughter is an adult there will be greater acceptance and healthier attitudes toward people with disabilities garnering media attention.

“I wrote “Monster Body” in celebration of my own disability. I aimed to acknowledge my body’s struggles, including compromised respiratory function, and its primary interface with the world, the base of my spirituality.” – Laura Hershey

Monster Body – by Laura Hershey

I mock the human form

My back, shell-sharp curve, my thin wrist bone
Limbs that do not twitch beyond the digits
Illustrate terror, the randomness of damage

Right lung so different from left
Thrust forward, fuller-breathed
Its more delicate mate shrunken
Adjusting to a smaller, collapsing cage

Brief breaths, bent bones
Muscles weak as water, still as sleeping stars
Monster mine, monster body
One I would not trade

Not Shelley’s “hideous phantasm”
Just parts made from imperfect materials: sinew, scar
Cells, fluid, fat, and heart

Still I roar when burned by exile
Mobs swinging angry torches through stone streets.
Stubborn flesh threat of frail menace
Vulnerability shocking as violence
Dangerous, I carry
Secrets in my castle, fainted women in my healing search

Empathy repatriates me.
I take this shape, my body
Monster body mine
By my body I journey,
I learn, I love.
It is my lens, my light.

Kind Regards
Deb

Resources

Andrea Dworkin Feminist featured in Life Magazine

Andrea Dworkin Through the Pain Barrier

This is the last piece written by Andrea Dworkin (1946 – 2005), feminist, author, disability activist, composed just a month before she died in 2005. Few knew she suffered from an agonizing bone disease for several years. She describes with grim humor her worst moments and why she felt she was starting to heal.

The doctor who knows me best says that osteoarthritis begins long before it cripples – in my case, possibly from homelessness, or sexual abuse, or beatings on my legs, or my weight. John, my partner, blames Scapegoat, a study of Jewish identity and women’s liberation that took me nine years to write; it is, he says, the book that stole my health. I blame the drug-rape that I experienced in 1999 in Paris.

Andrea Dworkin Feminist featured in Life Magazine

Andrea Dworkin featured in Life Magazine

I returned from Paris and finished Scapegoat over a period of months while caring for my dying father. Shortly after he died I was in hospital, delirious from a high fever, with infection and blood clots in my legs. I was there for a month. John had been told that I was dying. I forgot that in hospitals when one is dying, nurses abrogate the rules. John was allowed in after visiting hours; nurses would pull the curtain around my bed and let him lie with me. This was my happiness. Doctors tell me that there is no medical truth to my notion that the rape caused this sickness or what happened after it. I believe I am right: it was the rape. They don’t know because they have never looked.

“Every three minutes a woman is being raped. Every eighteen seconds a woman is being beaten. There is nothing abstract about it. It is happening right now as I am speaking.” – Andrea Dworkin

A few months after I got out of the hospital, my knees began to change. They lost their flexibility. Slowly they stiffened. As they stiffened they became sore. They started to hurt terribly as if injured but not visibly injured. I got a cell-phone – before they were ubiquitous – so that if I couldn’t walk any more I could call a car. I had given up on New York City subways: my knees could no longer bend enough to use them.

I went to an orthopedic surgeon. I was diagnosed with osteoarthritis in my knees. I was treated with the anti-inflammatory Celebrex and, when that didn’t work, its stronger cousin, Vioxx. Which was recently taken off the market by its makers because of a risk of heart attacks or strokes; I was on it for three years. I had cortisone shots in my knees, followed by prednisone. The cortisone shots, which are painful, worked only once. Then I could walk without pain; in joy I sat on my front steps and talked with my neighbor – inconsequential chat. When I tried to stand up, my knees were rigid and excruciating. I managed to stand and swivel around; I took the remaining two steps up to my front door and used the door to drag me inside. I had had an hour-and-a-half of freedom.

My mobility lessened as the pain increased. Eventually I found myself housebound. I could walk only a few steps at a time, intimidated by the pain and the refusal of my knees to bend. John and I lived in a three-floor house. I could barely make my way up or down the steps. I’d crawl up the steps on hands and feet. I’d try to go down on my butt, step by step. The kitchen was on the first floor; the toilet on the second; my desk, books and shower on the third. My physical world became tiny and pain-racked. I stayed in my bed when I could. John brought me up food. I’d go out only to the doctors.

The orthopedist started giving me narcotics, most of which contained acetaminophen, a common, nonprescription analgesic. My pharmacist persuaded the doctor that the liver damage caused by too much acetaminophen was more dangerous to me than stronger drugs. Through her advocacy I got a drug normally given only to cancer patients. It was a little yellow lollipop and when in pain one was supposed to lick. I licked a lot. I was told that I had to have my knees replaced. The prostheses are made out of titanium and plastic. I had both knees replaced at once, a normal practice now but unusual even a few years ago. My surgeon would later tell me that if I had had one done, I would never have returned for the second. He got that right.

“Institutionalized in sports, the military, acculturated sexuality, the history and mythology of heroism, violence is taught to boys until they becomes its advocates.“ – Andrea Dworkin

I still don’t know what he did to me but I came to the conclusion that the operation was barbaric, involving as it did the sawing out of the arthritis, which meant sawing through bones. It was like being kneecapped, twice, or having one’s knees and bones hammered and broken into bits. After the operation I was in a nightmare of narcotics and untouchable pain. There were morphine shots. I asked for them and got them often. Even morphine shots in the upper arm hurt.

I had a hallucination but it is still real as rain to me. I was in Virginia Woolf’s house and I was happy. But “they” wanted me to go down the stairs. I can’t, I begged, I can’t. My hospital bed was at the top of the stairs and I was afraid that they were going to push me down. I saw the steep decline of the steps. I couldn’t get over my visceral fear of falling or being pushed or being turned over from the bed down the flight of steps. I kept experiencing my bed as being on the edge of a precipice.

One day, I remember, a nurses’ aide braided my hair and I felt cooler, cleaner. I was on the bedpan, but raising myself up to use it – knees – was so fiercely painful that I would rather lie in my piss.

Then the day came when I had to walk. There was a vinyl chair next to my hospital bed. The physical therapist’s name was Carl. He was like a tree trunk, big and solid. You can do it, he said. I’ll help you; we’ll just go over to the chair. It was impossible, outside the realm of the imaginable. Carl let me hold on to him in a desperate, tight embrace as he carried me over to the chair. My legs dangled, my knees twisted, I sweated, I screamed. See, you could do that, he said, without a shred of irony. I had to sit there for two hours, which meant knees bent but not weight-bearing. Nurses came by and gave verbal approval: good dog, good dog. Eventually Carl carried me back to bed.

Andrea Dworkin

Andrea Dworkin

Pain is a four-letter word. There is no way to recreate it through memory. It is not like the flashback arising from traumatic events such as rape or battery. The flashback is as if it is happening now, in the present, even if it is from decades ago. Pain can be recent yet inaccessible to immediate experience. Torturers know that people can’t die from pain. The consequences of pain – for instance a heart attack – yes, but not from pain itself, however intense. The horror is that no one dies from pain. This means that suffering can be immeasurable, enduring, without respite. So it would be for me for the next two years.

I was taken to an institute for physical rehabilitation. A nurses’ aide took me to shower in a wheelchair. I used a walker from the cot on which I slept to the wheelchair, maybe two miserable steps. I had two responsibilities – take my pain medications (Vicodin or Percocet) and show up at the right room at the right time for the scheduled rehabilitative class. I was not allowed to go to class if I did not take the painkillers. In fact, the pain was unrelenting. I lived for the next pill.

Physical therapy is based on tiny movements, increments of change that almost defy detection; it is built on the repetition of the minuscule. Yet to the hurt person these motions or movements or minute steps are hard. The first time is daunting and the 10th is like climbing Mount Everest. I sit in a big room, my wheelchair in a big circle of wheelchairs. Big is good because it means that my turn does not come often. I stand up by holding on to a walker and take a step. Then I step back and sit down. The cycle is hideous. The steps with the walker increase to two, then three. After several weeks I am assigned a means of locomotion: crutches.

Rehabilitation also includes so-called occupational therapy: throw a ball around in a circle; put round pegs in round holes; stand up, arms on a table, and read a page of a magazine; water a plant; play checkers or cards; and the pièce de résistance, cook and serve a simple meal. I am guided in the intricacies of shopping while crippled; I learn how to use a “grabber” to latch on to things I have dropped or cannot reach; I am taught again how to put on shoes and socks and tie shoelaces. I also have to meet the institution’s psychologist once. I keep getting called back. When I ask why, I am told that I am “interesting.” Well, yes, I think, I used to be.

The narcotics help me deal with the psychologist but the physical pain simply marches on. It does not lessen or change or stop. I learn three rules in my occupational therapy classes: never hold on to anything that moves; if it rains or snows, stay inside, even if that means cancelling doctors’ appointments (to those medicalised this is nearly profane); and kick the cat – if a cat curls up in front of your feet, kick it away. I learned to use my crutch to kick the cat. I will go to hell for this.

On discharge, social services are provided. My male partner is not expected to be a care-giver. I am sent an itinerant nurse, a young, poorly paid and badly trained social aide to help me with baths and to do light housework, and a freelance physical therapist who will do the drill: stand up, take steps, bend your knees, and – the killer – stand on your toes. And on discharge a wreck like me is sent to a “pain management centre.” Despite my small successes at physical rehabilitation I am in agony. I spend almost all my time in bed, a bed of nails, all through the knees.

The pain management centre is run by Curly, Larry and Moe. First there is a 10-page questionnaire. Rate from 1 to 10 your pain (I modestly assert an 8; my social conscience, atavistic as it is, tells me that there are others in more pain). Rate from 1 to 10: is your mother dead; how many people in your family have died of cancer; how is your sex life; how many times a week do you have sex?

They want me to undress so they can examine me. This is absurd. I refuse. There is a table they want me to lie on that they claim lessens pain. The bottom line is that New York State regulates narcotics to such an extent that regular doctors are reluctant to write prescriptions for painkillers; and so Curly, Larry and Moe at pain management put you through whatever rigmarole and then write prescriptions, none of which, according to state law, can be refilled. One is in a cycle of coming back for new prescriptions and new indignities every 30 days.

Curly eventually puts me on Percocet, fentanyl patches and methadone. I am on these drugs for nearly two years. I become slightly indifferent to the awful pain. My speech slurs and my memory is impaired. It is during this time that I write my memoir Heartbreak. I want to remember some good things in my life. I work for one hour a day. The narcotics do not make me Coleridge; but I hold my own.

One day I wake up and the pain is gone from my right knee – as if God had intervened. The pain in the left one is the same. I begin to go outside on my crutches. I can walk half a block to my local Starbucks. One day I sit there, still on my meds, and I see the ballet going on outside. The sidewalk is heavy with pedestrian traffic. They are so unselfconscious, these normal walkers. They have different gaits; they move effortlessly; each dances without knowing it. I used to be one of them. I want to be again.

The anti-drama of small gesticulations continues, this time in physical therapy several blocks from where I live. My left knee is still rotten. After another year of physical therapy they give me a cane. I put away all the crutches and other signs of what I call “disability chic.” I can sort of walk. The cane means victory. The pain in my left knee keeps me on my meds. Over the course of another year, that pain lessens. It’s a whisper, a shadow – it goes. I give up the pills, though I go through a nasty withdrawal from methadone.

Alas, there is no happy ending. John and I move to Washington so that he can take a job as managing editor of a large-circulation magazine. We live in an apartment without steps. I am on the cane. I go into physical therapy because, unable to stand up straight, I hunch over the cane. A few days later I am at the kitchen table reading a magazine. I stand up to get something and my right knee cannot bear any weight, none. I can’t use it because I can’t step on it. I have no pain; I have had no warning. I get to my crutches, which are in a closet. I need both of them in order to move. My right knee remains useless.

The physical therapist determines that the quadriceps above the knee has stopped working, because imperceptible pain occasions the quad muscle to give out. Then my knee buckles and I fall. It is dangerous to fall. I see the physical therapist twice a week. The orthopedic surgeon (“a genius with knees,” says my internist) puts me in a restrictive brace that allows my knee to bend only so far. That way, if my knee fails, I am unlikely to fall. After nearly a year of physical therapy my quad muscle is not much stronger and my knee still buckles. The surgeon sends me to a rehabilitation hospital where they make me a new brace, specifically fitted to my leg.

This brace works on the opposite principle to the first one: it immobilizes the knee so that no buckling is possible, thus, no fall is possible. It takes months for artisans to make the brace. It goes from beneath my calf to the top of my thigh. It is made of a black space-age material created to go to Mars or Saturn. Nothing makes it bend or stretch or break. It is completely unforgiving. I call it Darth Vader. It is the principle of evil incarnate.

The straps that attach front to back are Velcro. I am supposed to lock it when I walk and unlock it when I want to sit. The brace is worn under my pants leg so no one can see it. Each manipulation is distinct: in public locking it makes me look as if I am masturbating, and unlocking it makes me look as if I am fondling my thigh. The brace must be very tight and positioned perfectly to work. It takes me nearly two months to learn how to put it on and use it. I lose my balance in efforts to lock it. Once I flip backward, magically landing on a chair.

Self-respect demands that I clean up the faecal mess that my cat has made. It is the immobilized knee that makes bending down to the floor fraught with peril. I start falling and know that I must not hit the floor. I fight against gravity, my fingernails clawing at the walls and my hand grasping for the door frame. I know that if I fall I probably will not be able to get up. Somehow I raise myself. I was slow with the first brace. I had to remind myself to be patient. With Darth I make the turtle look like the hare.

The landscape is one of hazard. Anything can reach up and bite me: a break in the sidewalk; leaves; sand; mud; a sudden slope up or down; a stone; some pebbles. Anything threatening balance is dangerous: first the brace itself; then wind, people running or bicycling or being too close or too many; a fast car; a step; a curb; a puddle; heavy doors; slick surfaces. Crowds are impossible and so are stairs.

I want to be able to carry a cup along with a plate to the kitchen sink in one trip. I don’t want to have to make two trips. The cup slips and breaks. This happens several times. Is it a small thing? I can’t bear it or accept it. I reject the extent of my disability. I find myself in a silent rage that stretches over weeks. I am utterly exhausted by my incapacity. I am worn out from walking. I am sick of physical therapy. There are little humiliations.

Andrea Dworkin Activist Keynote Speaker

Andrea Dworkin Activist Keynote Speaker

I keynote a conference on the Holocaust. The organizer picks me up. She is driving a truck. I try to climb up into it. She physically pushes me under my ass without permission, all the while talking to me in baby talk, put your tooshie there, keep your cute little fanny there. I turn to her and say, I am disabled, not stupid. A friend throws a party for me in Washington. I ask how many steps there are to the apartment. He doesn’t know. I assume he will get back to me. John and I go to the party. There are three flights of steps. I can’t get to the party being given for me. We could have given it in another venue, the friend says the next day. It cuts.

I go to a bar and need to use the rest room. The men’s is filthy, the bartender says; the women’s is two flights up. I use the dirty one. I go to a new movie theatre that has elevators and disability bathrooms but the polished stone of the floor is so slick that my crutches cannot safely navigate it. I am walking with a friend who suddenly looks at my crutches and says, you don’t want to be this way the rest of your life, do you? Her repulsion is barely masked. I feel unutterably alone.

Each disabled person has a story, often including pain, impairment, disorientation and loss of control. Each disabled person lives always on the threshold of separation, exile and involuntary otherness. Only a determined policy of public access can help to mitigate the loneliness. One needs to be able to enter buildings; have a cup of coffee; go to a restaurant, the theatre, cinema or a concert; attend school; go to lectures or readings; use public transport, bathrooms, hotel showers; go to museums and sporting events and political rallies.

One needs equal opportunity in employment. One needs to be integrated into the world, not separated from it; yet one has special needs, ones that able-bodied people rarely consider. The low consciousness of the able-bodied increases alienation. For mobility problems, one needs a new geography: kerb ramps; ramps in addition to steps; handrails; grab bars; high toilets; light doors; wheelchairs; room for wheelchairs in public bathrooms and hotel rooms; elevators; safety in floor surfaces including carpeting; entry and egress from public transport as well as acceptable seating; and a host of other considerations.

Other disabilities require other remedies. In 1990 Congress passed the landmark Americans with Disabilities Act, which articulated in great detail the requirements for making the world available to disabled people. This is a civil rights law that recognizes the exclusion of disabled people from the larger community as outright discrimination. The law had its impact because disabled people found aggressive trial lawyers to sue commercial and private venues for noncompliance. The plaintiffs went after big-money damages for violating the civil rights mandated by the ADA. Eventually it became clear that compliance would be cheaper than continuing litigation. Losing money does put the fear of God into Americans.

I have to say that the ADA increases the quality of my life, Darth notwithstanding. I get through airports in a wheelchair provided by the airline; John takes me to the zoo a few blocks from where we live [and] the zoo provides a wheelchair; local coffee houses to which I gravitate have disability-standard bathrooms; there are special seats for me in cinemas and theatres and in rock venues; there are kerb ramps at pedestrian crossings and ramps or elevators in addition to steps and escalators in most public accommodations.

In my neighborhood I see many other disabled people outside all the time. We are not rare or invisible, because we are not hidden as if in shame. And bless those nasty trial lawyers, whom George W Bush and the Republicans hate so much. Without them the ADA would be a useless pile of paper. For myself – despite physical therapy, the breaking cups, and my immobilized knee – in the middle of the night, worn down, I listen to Yo-Yo Ma playing Bach or Loretta Lynn’s Van Lear Rose; and I am, I think, healing. Surely music must be more powerful than bad luck.

Andrea Dworkin

Resources

Two different spinal cord injury recoveries

Tale Of Two Recoveries

The following article by Korin Helbig posted in the Courier Mail reaching millions of readers on January 4th 2011 emphasizes the life-long benefit of early funding and support after spinal cord injury.

Vicki Field and Graham Streets were robbed of their mobility in horribly similar circumstances 16 years ago. But when attempting to rejoin society, one would be bitterly failed and the other well served by Australia’s disability support system, exposing its ad hoc structure.

Mr Streets’ motorbike careered off Brisbane’s Gateway Motorway near Nudgee in light rain in 1994, causing him to think: ”You’ve done it this time.”

Two different spinal cord injury recoveries

Courier Mail newspaper article

Then 26 and with his own successful electrical contracting company, Mr Streets crashed head-first into an embankment at 100km/h, severing his spinal cord. He left hospital, after 11 months of rehabilitation, paralysed from the chest down with minimal movement in his upper arms.

The State Government’s overstretched disability budget could offer little for Mr Streets, so, like thousands of other disabled people surviving on pensions, he was forced to move in with his parents, living at their Narangba home.

”That was a huge mistake but there was no other option,” Mr Streets said. ”Being at Narangba was very isolating. There were no footpaths or anything. I couldn’t get people in to assist me so Mum had to do it all herself. And God bless her, she did it all but at her age, I’m supposed to be looking after her.”

Mr Streets said he ”put his life on hold” for eight years as he languished on the public housing waiting list but had to act after he found his mother crying in the living room. ”It just hit me like a sledgehammer – it was me. The role of being my primary carer was killing her,” he said.

Mr Streets went to a temporary respite centre and refused to leave until he was granted a state-funded rental and about 40 hours of personal care a week.

He now lives independently at Bray Park and works as an accountant and web designer, but he has serious health problems and has lost 25kg in four years.

His largely housebound existence is a far cry from the lifestyle of Ms Field, one of only four people chosen for a pilot support program after she crashed her car into a tree on a rural road in Logan, south of Brisbane, in 1994.

Then 18, Ms Field suffered a shattered C6 vertebrae that left her a quadriplegic. She spent 14 months in rehabilitation.

But, under the trial, she was offered financial support and a carer, which enabled her to live independently on campus at the University of Queensland while studying law and economics.

Vicki later moved into a state-owned West End unit and started working full-time for the state government, further cementing her independence.

Spinal Injuries Association chief executive officer Mark Henley believes the two cases underscore the need for a national no-fault disability insurance scheme, which he said would provide all disabled people with the support Ms Field was given.

”If people have the right piece of equipment and the right personal support, their likelihood of maintaining a good quality of lifestyle is much higher, they are less reliant on the health system and more likely to be able to contribute to society,” he said.

The proposal is under Productivity Commission investigation and has attracted 604 submissions – more than any other inquiry  ahead of a draft report due out next month.

Mr Henley said the scheme would help 129,000 disabled Queenslanders who did not get the long-term support they desperately needed.

For Mr Streets, the scheme is imperative to relieve the burden on elderly carers. ”You’re supposed to be looking after your parents in their twilight years, not have them dress you, feed you, clean you up after a bowel accident or be reluctant to go out, fearing leaving you at home alone,” he said.

”(It’s) something no family member should be burdened with.”

Korin Helbig
Reporter, Courier Mail

Resources

Graham Streetrs Mark Hennley

National Disability Insurance Scheme

On the eve of the Spinal Injuries Association’s 2010 AGM, members Vicki Field and Graham Streets joined forces with Association CEO Mark Henley and National Disability Insurance Scheme (NDIS) Campaign Manager Fiona Anderson for a media opportunity to call for major social reform that would transform the lives of people with disabilities and those who care for them. Currently, 700,000 Australians need daily personal support, with only a small percentage of people receiving the support they require. 

A NDIS would be a no-fault insurance scheme funded by all taxpayers through general revenue or an extension of the Medicare insurance levy. It would provide funding for essential personal care, therapy, aids, equipment, home modifications and access to the community, education and training for people who acquire permanent disabilities either at birth, or any stage of their life. 

Vicki and Graham met in dreadful circumstances – in the Spinal Injuries Unit at Brisbane’s Princess Alexandra Hospital in 1994 following separate horrific road accidents, in which both sustained quadriplegia. 

Vicki received funding as part of a trial project at the time, which allowed her to live independently, study and work. Graham received no funding and was forced to move back home with his aging parents. It also meant he couldn’t pursue further study, and he continues to battle ongoing health issues. 

Both Vicki and Graham are passionate advocates for a proposed NDIS that the Productivity Commission is currently investigating, with the final outcome to be decided in 2011. 

Keynote Speakers Graham and Vicky

Vicki Field and Graham Streets met in dreadful circumstances – in the Spinal Injuries Unit at Brisbane’s Princess Alexandra Hospital in 1994 following horrific road accidents. 

Vicki was 18 at the time and studying science at University of Queensland, while Graham was a 26-year-old successful small business owner, running his own electrical contracting company. Both were outgoing, active, goal-oriented young people with many future plans. 

Following Vicki’s single vehicle car accident where she sustained C6 quadriplegia and internal injuries, and Graham’s motorcycle accident on Brisbane’s Gateway Arterial, which not only caused C4 quadriplegia, but the top half of his fingers on his left hand were burnt to the bone from the bike’s exhaust, both spent many months (14 for Vicki and 11 for Graham) recovering and rehabilitating in hospital. 

In 1995 when both were physically able to leave the Unit, post-hospital support and assistance was minimal. However, at the time there was a pilot project operating called the Continuum of Care program. Four people were randomly chosen (two from the Spinal Injuries Unit and two people with acquired brain injuries). 

Spinal Cord Injury Life is a Lottery

Like all lotteries, someone has to win and someone has to lose. In this instance, Vicki won and received funding that allowed her to move into temporary housing, before she moved to on-campus accommodation at UQ. The funding also allowed her to receive personal care, equipment and a case manager, who helped her navigate the confusing and bureaucratic minefield of working out what disability and support agencies were available, and what she was entitled to. 

“There’s no way I would have been able to go back to university if I didn’t receive that Continuum of Care funding. I think going back to uni and surrounding myself with people was a really important way forward for me so I could focus on the future,” Vicki said. 

Graduating with a Bachelor of Economics, Vicki eventually moved into her own unit at West End, where she still lives. Working a Senior Program Officer for the Department of Communities (where she has been employed for five years), Vicki said she was forever grateful that she did not have to rely on, or be put in the situation, where she had to ask her family to care for her when she left hospital. 

“It’s just not a workable relationship – your parents should not have to look after you,” Vicki said. 

“Not only was I able to pursue my own opportunities after leaving the Unit because of that funding, but my whole family could continue to live their lives. For example, my mum went back to uni and studied law. How could she have done that if I’d been forced to move back home and become reliant on my family?” 

Graham had no such choices. With “grossly inadequate” assistance available, Graham was forced to move back in with his parents at their property at Narangba, north of Brisbane. 

“That was a mistake, but there was no other option. Being at Narangba was very isolating. There were no footpaths or anything like that. And at that time, personal care nurses didn’t cover the area every day of the week. I couldn’t get people in to assist me, so mum had to do it all herself. And god bless her she did it all, but at her age I’m supposed to be looking after her, not the other way around.” 

When Graham moved back home, his parents were in their mid-60s and about to retire. Those plans quickly changed and Graham’s mother became his full-time carer. 

“The eight years I spent at home meant by the time I finally got into my own house, I was already eight years behind,” Graham said. 

“If I’d had enough funding to get personal care support from the beginning, it would have made the world of difference.” 

“The day I knew I had to move out no matter what was when I came into the living room to ask mum something and found her crying with her head in her hands. She said nothing was wrong but it hit me like a sledgehammer. The reason she was crying was me.” 

“You’re supposed to be looking after your parents in their twilight years, not have them dress you, feed you, clean you up after a bowel accident or be reluctant to go out fearing leaving you home alone. It can be quite humiliating and something no family member should be burdened with.” 

The Long Road to Independent Living

Desperate to live independently and relieve his parents, Graham moved into a temporary respite centre, which he refused to leave until housing was found for him. “I ended up being at the centre for six months. All together I had been waiting eight years for accessible housing.” 

Because Graham only received enough funding when leaving hospital to get a powerchair and for the family home to be made accessible, his long-planned dream of studying electrical engineering at university was quashed. 

“If there had been that support and assistance available for me to go back to uni, then I could have studied and gone back into the workforce. But I didn’t have the choice. I wish I had found employment before I left hospital. I wished a lot of things that I just wasn’t able to do because there was no support available.” said Graham. 

While Vicki enjoys an active life with few health problems, Graham has lost almost 25 kilograms in the past four years and his doctors still cannot find the reason why. At the moment his funding via Disability Services enables him to 38.5 hours of personal care a week (from 8.30am-11.30am and 9.30pm-midnight each day). However, over the past three months Graham has been experiencing ongoing pressure areas and has spent much of that time in bed.

“I’ve had to call one of my Personal Support Workers (PSWs) at four o’clock in the morning almost every two weeks of late because I’ll wake up in the middle of the night and be freezing or boiling hot unable to adjust my covers. People with spinal cord injuries can’t regulate their own body temperature, and as I have very limited arm function, I often have to just lay there until my PSW turns up in the morning at 8.30,” Graham said. 

“I need more funding now basically so I don’t cook my kidneys because my covers become too warm. I need that extra bit of assistance overnight so I can actually get a full night’s sleep and not feel as though I’ve been hit by a truck the next day.” 

While Vicki and Graham have had vastly different experiences over the past 16 years, both agree a NDIS is vital for Australians who have, or sustain, a permanent injury or disability. 

Impact of NDIS After Spinal Cord Injury

“What if it was your son, or wife, or mother, or grandfather who had a spinal cord injury or any type of disability. Are you going to drop your job and go and care for them for the rest of their life?” Graham said. 

“Just wait until you need ongoing support to be able to live in an accessible home in an accessible community and you want to go back to work and maintain some semblance of your former life. Then you’ll realise that not only is a National Disability Insurance Scheme an investment for the one in five Australians who have some form of disability, but also for the people who care for them.” 

A National Disability Insurance Scheme would be a no-fault insurance scheme funded by all taxpayers through general revenue or an extension of the Medicare insurance levy. 

As someone who received adequate support to allow her to return to live as independently as possible following her injury, Vicki knows the value of a no-fault program that provides funding for essential personal care, therapy, aids, equipment, home modifications and access to the community, education and training. 

“Wouldn’t you like to know if you were in a situation where you needed personal care support that you wouldn’t have to wait three or four or 10 years before you could get on with your life. Why not reduce that long period for individuals who are waiting to get their own house by giving people what they need when they need it.” Vicki said. 

Resources 

love lost quadriplegic carer

Quadriplegic Lovers Relationship Troubles

I am 20 years old and have been dating my fiance, Chris 34 a C6-C7 incomplete quadriplegic for almost a year now. Chris has no feeling from the chest down, complete use of his arms and limited use of his hands (he can write, type, push his manual chair and even drive so he does very well for himself). Chris has been in the police force for 10 years now and before he started his career in law enforcement he was an Army Ranger. Chris was shot in the neck while on duty in 2007 serving involuntary commitment papers to remove a 60 year old woman from her home.

It was love at first sight! He has always been in good spirits. He has accepted himself and his new life style. Which I admire so much. Lately our relationship is not what it used to be. I am his primary caregiver, we have attendant care 4 nights a week for 3 hours, the rest is left up to me.

love lost carer girlfriend and quadriplegic boyfriend at beach

I am not in good health myself, but I feel like I don’t have the right to complain. He always has to outdo me with his problems. It’s not a competition who feels the worst. Every day I find it harder and harder to take care of him. I am wearing myself out. Worst of all, he is a very cold hearted person with a very dry sense of humor. But I do admire him so much for what he has overcome in his life.

In the Beginning

Before his accident he was an athletic person, he ran every day, a semi-pro cyclist, he loved to hike and camp. He is in very good spirits and doesn’t see himself as disabled. He still lives a very active lifestyle, which wears me out tremendously.

In the beginning everybody was against us. Especially my older brother who was his SWAT Team partner and was by his side the night he was shot. I love him very much and my family has just not gotten to where they accept our relationship. I left home to move in with Chris, I gave up everything that I worked so hard for. I quit my job, dropped out of school, and gave up my car for a Volvo (so he could transfer easily and the wheelchair fits in the back). So therefore I have nothing of my own anymore. I did it out of love for him. He was the best thing that ever happened to me, and I wanted to be with him more than anything despite my family turning against me.

Quadriplegic wheelchair couple holding on for love

Wheelchair Couple Holding On For Love

We have our good days and bad days as any relationship does. I gave up a lot to be with Chris because I love him so much. Adjusting to a quadriplegia lifestyle has been really hard for me. I still haven’t gotten used to other women being in my house taking care of my fiancé, knowing about our personal lives and every little detail that goes on in our home. I pretty much take care of everything else on my own the laundry, cooking, cleaning, taking care of his service dog, making sure he has his meds every week, taking him to work, picking him up from work, taking him wherever he needs and wants to go.

Where Did My Life Go

He is not the same person that I feel in love with. He has become very demanding and says hurtful things. When I try to talk to him about it he just says it has to be done. I constantly have to clean up after him on top of everything else and he doesn’t care. I don’t see him as disabled, I see him not the chair. If he is able to make the mess he is able to clean it up, but he leaves it for me, if I didn’t do it, it wouldn’t get done. Then he just says that I’m OCD. But what is wrong with wanting a clean house? He just expects me to do everything and I never get the respect or appreciation that I think I deserve. He never offers to help me and I am getting very tired and sad.

I want to go back to school, but he says that I don’t need to because I get paid a very decent amount of money as his primary caregiver. But I want more for me, I want to be successful and have a career. I want a family one day and I know that I could never have children and take care of him. He is getting a vehicle that is modified for him to drive soon. I am hoping that it will help our relationship and take some stress of me.

His Quadriplegia is Consuming Me

quadriplegic wheelchair love couple holding hands

Quadriplegic Wheelchair Lovers

I have explained my feelings and thoughts to him as we are very open with each other. We have never had a problem expressing our feelings. After I tell him how I feel, he just says sorry. That’s it… “sorry.”

I don’t know what to do anymore. I have thought about hiring weekend, night time help for the bowel program and showering, but he says that the weekend is our time for just us. The last time I mentioned it, he said “Is it really that hard for you to do it a couple of nights?” It is, because we don’t have simple quiet weekends at home, we are always on the go, by the time we get home I am worn out from the traveling, transfers, and putting the wheelchair in and out of the car.

I do the morning routine; I get him up every morning and drive him 30 minutes to work then drive 30 minutes back home. He says, what is the point on hiring a morning time aide, because when he gets his truck the morning routine will just consist of getting him up and dressed. But he has been saying the truck will be here in a couple of weeks… for about 3 months now.

Quadriplegia & Wheelchair Partners Insight

I guess I am asking for your advice as wheelchair users other quadriplegics and their lovers or partners. Am I being selfish? Since I had an idea of what I was getting into? I never knew that it would be this hard. I can’t do the things that I want to do in life, because I am always assisting him in the things he wants to do. He is very inconsiderate of my feelings and is very selfish. It is always about him, but what about me? Am I the selfish one?

I don’t know what to do anymore, I am asking for your advice. I hope that I haven’t offended you in anyway. If I have I certainly did not intend to. I hope that you can help me and give me some insight.

Best wishes to you!
Caytlin

Carers – A Very Special Kind Of Person

Hi my name is Marilyn and I would like to share with you an experience that changed my life forever. Going back can open old wounds that I have been trying to heal for the last six years after caring for my dear husband who eventually died of Motor Neurone Disease. A progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

SOUL MATES

Ten years ago I left and divorced my first husband, after 18 years in an alcoholic marriage. Six months after leaving, I met a man whose name was David. He made my heart flutter, an experience I hadn’t felt for a long time. There was an attraction, but as we were both coming out of a long dysfunctional relationship, we took it slowly. David and I come from two different worlds, him from sex, drugs and rock and roll, myself from the picket fence in the suburbs.

This man had arms like Popeye from working on trawlers, and riding motorbikes for the last 17 years. He has a voice that was as deep as the ocean, long blond curly hair and was very romantic. I remember one day in October, after going for my first bike ride, sitting and watching the sunset over the water holding his hand. I Felt a sensation run up my arm and knew that this man was special. I knew that we would be together as one. It brought me to tears.

MOTOR NEURONE DISEASE DIAGNOSIS

We spent the next 12 months together riding around on the bike having fun for the first time in a long time. We spent a lot of special time together, not always smooth sailing. We worked through a lot of obstacles like most couples. Our love grew strong. It was in August 1994 that our world changed forever. David had been acting a little strange. He would stagger and slur his words seeming to be drunk, which was not normal. David finally told me he had been diagnosed with Motor Neurone Disease (MND) and that he would die. End of sentence, end of everything I had ever dreamed of, end of my life as well. David said that he would have rather ridden his bike off a cliff than have to tell me. Our world collapsed.

ACCEPTANCE

When facing death there is shock, denial, disbelief, anger. Feelings and emotions were thrown all over the place. I think I spent a long time in disbelief. How could this be happening to the man I loved more than life itself. He who had done no harm to anyone else was going to die. Not only die but the road to that death was not going to be pretty. Not that any disease is, but motor neurone disease is not a nice way to die. Motor Neurone Disease is a muscle wasting disease, and in the end you are completely paralyzed as the body’s muscles simply stop working, the mind remains unaffected. We were told it could take 3 years, could take longer or shorter, to go and do what you want now before it takes over. That November I moved in to help care for him.

LAST WISHES

One of David’s dreams was to own his own boat so he could go sailing off into the sunset. We flew to Tasmania and found his boat. With the help of a couple of mates he sailed and motored the boat back to Queensland. David never had a lot of luck when it came to motors, so it was a long journey home. It was his last trip but he had a story to tell and lived his dream, that was the main thing. It was around this time he had to stop riding his beloved 1981 Moto Guzzi 1100.

Motor neurone disease progressed very quickly for David. I know with some people it can take a long time to make a move but with us it seemed every day was different. Before we knew it his beautiful voice had gone. His mobility became increasingly more difficult. Our life centered on renovating bathrooms, moving furniture, getting aids for disabled and buying equipment. We would just get used to living a certain way then would have to change as his motor neurone disease advanced.

TOGETHER AS ONE

My life became very focused upon David and his needs. I became his voice, his hands and legs. I also had 3 teenage children from my first marriage to consider. They lived with their father but I still had to be mother for them. Additionally David’s stepdaughter lived with us. It wore me out. My world had changed. I became a carer. We tried to continue our relationship as if everything was normal. For me that was difficult. I had to wear so many different faces and not allow the carer to overcome the lover in me. I lost myself to this insidious disease.

FULLFILING DREAMS OF TRAVEL

David wanted to go back to Fiji, he had lived there as a teenager when his father worked for Qantas. In January 1996 we flew to Fiji and spent a week cruising the blue lagoons and driving around north Fiji. It was like our honeymoon. In May we chose to be married. Three days later we left for England and the Isle of Man for the TT motorcycle races, another one of David’s long held dreams. We spent five weeks in England and Holland. I spent those five weeks pushing him in his wheelchair all around the country side. David came back excited that he had finally got to the Isle of Man, a place he had dreamed of for 17 years. I came back honored for the experience but totally exhausted. For the next 18 months his motor neurone disease progressed to the extent of him only being able to move his eyelids to communicate.

DAVID CHOSE WHEN HE’D HAD ENOUGH

On February 24th 1998 David died at home in bed beside me, just as he had wished. He was at peace. How dare the sun come up the next day? How was I supposed to go on? How was I supposed to live without him? My body felt like my heart and soul had been ripped out I was left with this huge open wound. I had spent the last 4 years loving a man who was my other half, my soul mate, and now he was gone. I was left with only memories. David and I had put everything into our relationship, probably more than anyone who had been married 50 years. We only had 18 months, and it was full on.

LETTING GO TO FIND MYSELF

For me to be carer and lover, friend and wife was bloody hard. As I mentioned earlier I had many faces to wear. Sometimes I didn’t even know where I ended and David’s voice, hands, legs began as I had become a part of him. I knew what it was he was saying, and had translate it to other people. I had to get inside him to understand how it was for him. Many times loosing myself. It was all so consuming, to be the carer doing things for him 24 hours 7 days a week. It wore me out. The carer in me would take over and I would be too tired to be the lover. There were times when I felt he was just another job I had to do.

It has taken me 5 years to start to find myself again. David found it hard to look at himself as a sexual being once the motor neurone disease took over. He called himself a freak. To me he was the same person, nothing had changed. I had to change my attitude towards “my duties”. There was nothing more I could give him than myself. How much longer would I be able to make love to him, what more could a wife give to her husband than herself, to be together as one, one spirit.

COPING TODAY

I went back to work as a personal carer for a nursing service and then a respite center for the disabled. I had and still do have a lot of empathy for the dying and disabled. It can be an asset and a liability. Finally I burnout through not dealing with my anger and grief at the time. I busied myself so much that I didn’t have to feel. I suppressed my anger which lead me to depression. My digestive system stopped. Physically I couldn’t do anything anymore. It took me 12 months to realise this. Now I take it slowly one day at a time.

Looking back, I could have done things a lot of things differently. Crying at the funeral could have helped. Getting angry could have helped. Speaking up for myself and to support groups could have helped. So now six years later I would not have to deal with this before my life can take off again. The pain is not as raw anymore, but I still grieve. I still miss him, I always will, my dear David.

Yours Truly
Carer & Wife
Marilyn