Don’t Dis My Ability – the story of Boccia player, Rachel Sutton

Don’t Dis My Ability – the story of Boccia player, Rachel Sutton

DEMAND: aka ‘Design and Manufacture for Disability’, is a UK based charity. It is a charity dedicated to helping people with disabilities acquire the bespoke equipment they need to help them with their everyday lives. Over the last 30 years, the people at the heart of this vital charity have helped transform the lives of more than 10,000 people f all ages and with all types of disability.

For the last 8 years DEMAND has manufactured Boccia Ramps. DEMAND makes Boccia ramps available so that more people can experience this sport. By doing this we have made Boccia more easily accessible to those who want to add a new sport to their leisure activities. The proceeds from the manufacture and sale of our Boccia products go towards supporting our not-for-profit charitable work.

DEMAND sells these ramps all over the world. Recently we ‘met’ Margaret. ‘Met’ as in we swapped emails. She purchased one our Fusion ramps for her daughter Rachel. They are based in Narwee, Sydney, Australia. In our exchanges we learned of Margaret’s incredible brother, Ross.  Margaret told us

I recall my brother Ross leaving for the Paralympics in 1960 and returning with a gold medal.  He  had won not just Australia’s first gold at the Paralympics, Ross also won the first gold on offer at the first Paralympics games, held in Rome in 1960 (more info here)

I also remember my father using his bow and arrow and shooting an arrow into the back paddock.   We all looked for this arrow as you can imagine Ross had just been to the Paralympics and all were quite upset it had got lost   Ross told us to stand clear and he shot another arrow in the same direction as my father had shot his and guess what it landed barely an inch away from my father’s arrow.  This bow and arrow set of Ross’ is now in the Hall of Fame in Australia.  Ross was a humble man and his tremendous feat remained hidden from the world until the advent of the internet. Now his Gold Medal win is known throughout the world.

As we continued our exchanges Margaret offered a great idea about an instruction leaflet to help an Assistant pack away the ramp in its carry-box. She was kind enough to send me photographs of her daughter, Rachel, using the Fusion ramp. I asked Margaret about how Rachel ‘got into Boccia’ – and I heard a wonderful story. I cannot begin to paraphrase it so let me share it with you in the words of Margaret and then later Margaret and Rachel together.

Margaret talking about Rachel

My name is Margaret and I am a Registered Nurse. I trained at the Royal Alexandra Hospital for Children in Sydney Australia.

I adopted Rachel at the age of 2 through our Special Needs adoption program.

Rachel is intellectually normal but has the most severe form of Cerebral Palsy. People used to call it Athetoid Cerebral Palsy.

We all know now it has many different types of tones and Rachel worst form is Dystonia, which affects all her body.

Rachel was the first person in Sydney to attend a normal school with a full time teacher’s aid where she kept up with her peers by using multiple choice questions, a way of answering any question asked. She could not use a communication board as her tones were exacerbated when any effort was applied when using her head or arms. Rachel achieved a technique of raising her eyes to answer yes or when tones were not too great would use her voice with a faint yeh for yes.

Rachel would be very twisted if it were not for The Children’s Hospital Westmead Sydney Australia.

She has a baclofen pump inserted in her abdomen, which regularly infuses the drug into her spinal cavity. Rachel also has regular injections of Botox every 4 months in her limbs. These drug help keep her strong tones more relaxed.

Without these drugs it would be impossible for Rachel to perform any tasks. We have been able to bring out her knowledge she has locked in her brain. Rachel was able to absorb all this knowledge by taking Rachel out everywhere a so called normal child went. We had to give Rachel the same chance to learn as everyone else.

At the age of 20 Rachel is having a great life. She manages her own funding through my help and does not attend a group placement but has her own worker to do whatever she wishes.

One of her choices is attending Boccia.

Having a good education Rachel can go anywhere and find whatever she does is interesting as she now has full knowledge of the world.  Her knowledge just does not sit around an underage level but that of and adult so she can make her own decisions and enjoy life where ever she goes. She enjoys movies ranging from drama to comedy. She had a most wonderful sense of humour.

Rachel is a member of the Salvation Army where she completed her Guards award and was presented with the General Guards award from our General who is in England. This is equivalent to the Boy Scouts and Girl Guide Movement.

I won’t say Rachel does not suffer pain. She has had Rods put in her back from neck to pelvis from curvature of the spine. She has pain when the Botox wears off.

Life is so much better because we Focus on “Her Abilities not her Disability.”

Rachel did this most wonderful poem – Don’t Dis My Ability – when at school in English class. She won $3,000.00 for the school and $500 for herself.

Don’t Dis My Ability
When you think my thoughts are far away
You‘d be surprised, what I would really like to say
Of those who think I have no brain
But I would like to let them know
The joke’s, on them of what I know
Technology now is on its way
So one day soon I will have “My Say”

By Rachel Sutton

Margaret and Rachel talking about Boccia

Rachel finished school after completing her High school certificate in mainstream school.

Rachel started Boccia this year with a team set up by the Cerebral Palsy Alliance. Sydney. Australia

Rachel is in a wheelchair with very little meaningful movement of her body.

Rachel was finding Boccia very boring as it took Rachel and me her mother/carer such a long time to set up her moves. We felt it was not fare on the other players to wait so long.

This Boccia Fusion ramp has been a great beginning for Rachel.

One does not need to be an Olympic player to enjoy such luxury.

Rachel has found she can enjoy Boccia better as it takes little effort to give me, her carer instructions.

The ramp can rotate smoothly in such small increments. Rachel can tap the side of the ramp she wishes the ramp to turn with her head pointer with little effort.

When using the Fusion ramp I could follow Rachel’s instructions without feeling stressed the ramp was doing its own thing.

The old wooden ramp dropped or moved right or left if Rachel’s wheelchair or I touched it by accident.

I twisted my body and went home with pain in my back each week.

Rachel is a beginner player, which means she does not need to be a top Boccia player to own a Fusion Ramp but she needed it to enjoy the game and have social times with her friends.

“Isn’t it great seeing how they overcome their disabilities so we can see their abilities”.

Rachel has won her first 2 games with the Fusion Ramp.

I cannot add anything to this story other than how happy we all were to hear that Rachel had demonstrated how she brought her poem to life – her own life – Don’t Dis My Ability.

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