Pam’s story – Disability is a pain in the butt

Introduction

My name is Pam, and I am 67 years old and have lived with a disability for most of my life. I became disabled at 17 years of age after having bone cancer in the leg. My leg was amputated from the hip. 

Looking at someone with a body part missing may be confronting for many people. I can understand why “I freak people out”.

Life with a disability- the early years

 It was difficult for me being a young female and living in an age where physical beauty was almost worshiped. This was a common mindset in the 1970’s.

I was embarrassed by my disability and was often made to feel humiliated by misogynistic males.

When I appeared in public for the first time after losing my leg it was a shock for me. I could no longer be in a public place without people staring at me.  Over the years children have regularly come up to me and asked where my other leg was.  

People would constantly tell me that they felt sorry for me or tell me how brave I am. Over the years many strangers have asked, “What happened to you?” They never seemed to think that their questions were offensive or intrusive. It’s like that they had the right to ask. I don’t blame kids for their actions, but adults should know better.

I learnt to walk on an artificial leg even though it could be extremely painful. Because my amputation was so high it meant that I had to wear a huge brace around my hips. At times my skin would blister, and the pain was intense, especially in hot weather.

For many years I was afraid to be seen without my artificial leg because of the way people reacted to me.  I never went swimming and I love swimming. I remember a time when my foot broke and fell off and there were times when my leg would break and I could not walk. This could happen at any time and made life challenging. 

Also, my artificial foot would also get under the brake when I was driving. That was a big problem.

I wore an artificial leg for many years and put up with the pain. Then one hot day I stopped wearing it and went for a swim. I swam in a dress because I can’t wear a swimming costume. People stared at me but somehow, I did not care. I was not able to get a job after that; nobody would employ me with one leg.

Life with a disability, the present

Generally, life is good; I work part time and I swim and paint. I have not worn an artificial leg for many years. While it was good to have my hands free to carry things wearing an artificial leg was not worth the pain. 

Now I walk with crutches and can move about freely. I think if my amputation would have been lower it would have been more comfortable to wear an artificial leg. 

I no longer have issues with body image or low self-esteem, and I don’t care what people think about my disability as it’s not their business. I believe in myself and always try to do my best. 

Things about a disability that are a pain in the butt

  1. I regularly fall over and at times I have hurt myself. I have to be extra careful in the rain. My balance is getting worse as I get older.
  2. Trying to access disability parking or accessible toilets when they have been taken by able bodied people. 
  3. Inaccessible public places and councils that mouth off about doing good things for disabled people but do nothing.
  4. High levels of unconscious bias from management at work.
  5. What I call “the disability dichotomy” telling you that you can’t do things because of your disability and then saying you don’t need accessible parking. “No special treatment for you.”  It’s just not, and never has been, a level playing field.  I was once told by a Manager of a disability service that I was not disabled enough to understand disabilities. She was not disabled.
  6. Lack of supports and finances for people with a disability to achieve and be the best they can.

 Is there an upside to having a disability?

I don’t think that there is anything positive about having a disability and if I could change and not be disabled I would “in a heartbeat.”

I belong to one of the most powerless groups of people in our society and it’s always a fight for your rights. 

I am just glad that I am able to work and not spend my days waiting for pension day. I did live like that for many years.  I was lucky enough to put myself through TAFE and university.

So many people with disabilities are living in poverty with no hope of social mobility. 

What one thing would you like the reader to understand about living with a disability

I think it’s important to do your best at all times. We have one life to live and if you have to live with a disability, that’s a pain in the butt, but life is worth living. Hold your head high and believe in yourself and don’t let anyone bring you down. You may not always win but at least you tried.

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