Written by Paul Watson – PDA NT Director
My disability is a very visual one that without correct clothing can not be hidden. For many years I was embarrassed, in fact so self conscious it would stop me from living a life like so many others.
Being an emputee can put restrictions on many of the things you do in life, but my internal battle with self image in my late teens through to early adulthood haunted me. When I came to terms with the fact that I was gay it was amplified. I was able to camouflage my sexuality, but my disability was always forefront.
I did not know any other amputees when I was growing up. All the amputees I met were at clinic and they were much older. Even in medical and clinic situations, my stump was a close guarded appendage that I was extremely uncomfortable to display – let alone to have it touched. When I lost my leg I was 10, school was rough – we all know that kids in their innocence can be cruel with things that they do not understand. I myself did not really understand. When everyone else was running and jumping, I was on crutches and just about to start the journey of rehabilitation. Moving into high school I was struggling with identifying my sexuality. This, topped with the day to day comments and taunts about my disability, caused me to pull back, caused me to question my place on this planet.
Coming to terms and understanding about my sexuality even at that point in time was an easy transition. It was there but, unless I chose to disclose it, no-one would ever know. I was old enough and (thanks to early internet gained information) able to form a circle of friends who helped me understand who I really was. But I felt so disadvantaged as I was now gay with a disability in a harsh world. Who would want to enter into a relationship with me?
Technology in limbs was moving fast and advancements meant I could walk (Gate) more naturally and I could, with long pants, feel like I was blending in. However, I was always self conscious of the fact that I was so different.
I was now of an age where real relationships could form, both on the emotional and physical sides, but I was so guarded. Quick interludes could happen, but I was unable to commit to anything more. To do so would mean that I would have to face my fears. The fear of judgment. The fear of questions. The fear of showing the most intimate part of me.
In my life I have had 3 real relationships. I sabotaged the first 2 with my insecurities. Reminiscing on them, I feel guilty that someone was prepared to commit but I was just so insecure with regards to my disability that I destroyed any chance. The third was so stubborn that he saw through my subterfuge and used understanding and compassion against me. He was able to understand my struggles with my disabilities and was there for me – without ever asking questions or showing judgment. He was in fact my unspoken support in life. Not just my partner, friend, confidant and lover – he was my disability support person who I unwittingly relied on for so much.
In our relationship I never let him see me fully “disabled”. It was there, but I never let him see my stump. Never let him see me without my limb on – no matter the pain and suffering I had to sustain. I couldn’t. I was always in bed first so he would not see me crippled. One night he came in and sat on the edge of the bed with a cup of tea for me, as he did many nights to chat. This time was different. He said that he’d noticed that I was struggling, limping and in noticeable pain. I tried to disregard it as nothing, but he pushed asking me what was going on. I felt cornered and vulnerable. He said that he wanted to know. He needed to know. He could feel I was suffering and he loved me and it hurt him that I could not talk to him. Reluctantly I explained that I had a pressure sore that was inflamed and causing extreme discomfort, but that it would soon be gone. He asked so many questions that I had never wanted to answer. I did though. Then he asked to see my stump – something I had never let him see. Something I never wanted to share with anyone. It was my dirty little secret that I never wanted to see light of day.
I gingerly slid it out from under the covers, revealing its pale pasty inflamed self. He looked at it with so much compassion, then he looked me in the eyes and asked if he could touch it. I was welling with tears from the fear. The fear that he would be repulsed. The fear that he would see just how weak I was. The fear that he would see me as a crippled freak.
He put both his hands on my stump, one either side of my knee. He was so gentle. He whispered how he wished he could take away the pain. Then he lowered his head and kissed my knee and from that moment I just felt safe, I felt free, like the weight of the world had just escaped me. In that moment I knew that he truly loved me for all of me. He had so many questions. We had been together for almost 8 years and not once had he asked. He just knew without asking how I felt about my disability.
From that very moment all my self doubt about my disability just washed away. I lost the feeling that I was a freak who needed to hide that part of me from the world. It was a strange feeling that took me some time to come to terms with. All these years of feeling this way had become a part of me, one that I know I used to push people away before they got too close. It took the love and compassion of someone understanding me for me.
Something that should have been available to me when I was younger.
You see when I first lost my leg, like most amputees, I grieved for it. In losing a huge part of yourself, you feel disconnected, you become different from and to everyone. I had no real supports in this to help me understand that I am still me, with just a little less of the physical me. My family did their best, but it felt more like pity and remorse for what they felt they had done to me. We live in a world that is just finding its understanding, I mean real understanding where things outside of the “normal” are normal.
Being part of an organisation like PDA to me is normal. It offers supports and information to those who need it when they need it. In a world surrounded by so many you can feel so isolated. I wish that groups like PDA, made up of people just like me, were there when I obtained my disability. I lost so much of my life living with insecurity, self doubt and what I now know as resentment. It just took one person to change my life for the better. Disability has been around since the dinosaurs, but still the information and supports are not getting to where they need to be. I used the internet (with its limited capability back then) to help understand my sexuality, but the information I required to help me understand my disability and issues surrounding it were just not there. The other thing I have taken away from this, is that the people who love us most and are close to us are our unspoken heroes. They take up a role we never expected or wanted them to have.