As a woman with a physical disability since the age of two, I never thought I was worthy of a man’s desires, or capable of fun times in the bedroom. With high needs in daily personal care tasks like toileting, dressing and showering, sexual matters never crossed my mind. What kind of man would choose me over an able-bodied person? They would be crazy to take on someone with additional needs.
Then in December I got Covid-19. I actually thought it would kill me, as I only have about 20% lung capacity. This is because I have a severe scoliosis and reduced muscle strength to cough. A simple chest infection can mean a hospital stay.
Two days before testing positive, I found out I was eligible for antiviral medication. So I was able to get them which meant that my symptoms were mild and only lasted three days. But it was during my isolation that I had a surprising conversation with one my support workers that changed my life. She told me about disability sex workers. I’d never heard of them, and didn’t even know it was legal here in WA.
In January 2023, at the age of 43, I had my first session with a male escort called Chayse. It was the first time I had been naked in front of a man, outside a hospital. A nerve-wracking experience, but Chayse made me feel comfortable and relaxed as he gave me an erotic massage at his place.
I felt out of my depths in terms of sexual knowledge, and didn’t even know that women masturbate (I thought it was something only men did). But what I didn’t know about sex, Chayse didn’t know about disability. We had a lot we could teach each other.
Unfortunately I didn’t get a ‘happy ending’ during the massage, but it wasn’t through lack of effort by Chayse. I booked him again for a second session, two weeks after the first. This time he came to my house.
I was more relaxed than the first session and I had paid for a mix of massage and escort. I had emailed him my list of fantasies: things I wanted to experience with a man. Top of my list was kissing, as I had never been kissed before and had no idea how to. Chayse was a good teacher and he didn’t disappoint. The three hours together flew by. I’ve seen him five more times since.
What I love most about Chayse is the way he makes me feel. He sees me as a woman first, with the same wants, needs and desires as any other woman. My disability becomes irrelevant. Sure we need to do some things differently, but it isn’t a barrier to accessing physical touch or intimacy or pleasure.
It is also a very safe way to explore sexual matters. By paying for the service, I have felt in control. If Chayse did something I didn’t like or made me feel uncomfortable, I trusted him to stop. I am immobile when in bed. It’s not like I can get up and walk away; a vulnerable situation to get myself into. But by paying a professional (a ‘sexpert’ as he calls himself), I maintain control. It is in Chayse’s best interest to do the right thing and satisfy his customers, or I won’t book him again. It’s no different to seeing an OT for equipment advice or a physio for aches and pains.
Chayse is very body positive and I have learnt from him that every body is beautiful, even mine. It was just after our second session that I got more comfortable telling people about him. I actually wanted to tell the whole world what an amazing service it is, how it has given me a new sense of worth, increased my confidence and made me feel amazing. But I was scared of people’s reactions.
The more people I told, the more positive reactions I received. They were really happy for me, and could see it made me happy. So I emailed the Deputy Editor at Take 5 magazine with my story idea about using escorts.
She loved the idea straight away. But I had to decide whether I wanted to reveal my identity, change my name or show my face in photos.
It wasn’t an easy decision, but again I had the support of family, friends, and of course Chayse. The key message I wanted to convey through the story is sexual health is a basic human right, according to the World Health Organisation. Just because I have a physical disability doesn’t mean I don’t deserve intimacy and pleasure. I’m not ashamed of wanting it for myself, only that I didn’t start many years ago.
I’m speaking out and sharing my story now in the hope that others with disabilities realise they too can have it. The hours I’ve spent with Chayse have been some of my happiest. We’ve slow danced, had baths together, slept together, been swinging, I even rode in his V8 ute! I’ve bought lingerie and toys for the first time in my life. It has opened up a whole new world for me that I never thought I belonged to. These are opportunities I’d never thought possible, and I want other people to have their own fantasies realised.
I self-funded the first four sessions, and claimed the last three on NDIS. Check with your LAC to see if you can too. I self manage my funds, but believe the NDIS should see escorts as an essential service and fund it adequately. Relationships are tricky enough for able-bodied people. For some people with disabilities, escorts are the only way we can have a safe, positive sexual experience. Why deny someone that because of cost? It’s an activity those without disabilities take for granted.
I must thank those who have spoken out before me, who gave me the confidence to do the same. Amy Calladine wrote about her experience on MamaMia, Hannah Diviney spoke about acting on The Latecomers on the ListenAble podcast, and TV shows like The Swiping Game and Better Date Than Never have made talking about sex more mainstream and acceptable.
So what’s in store for me in the future? I have been blown away by the response of my Take 5 story since it was shared on news.com.au. I’ve had messages from journalists from as far away as Norway and the UK asking to interview me. And I’ve loved all the comments on Facebook and messages from strangers thanking me for my story. It’s obviously an important topic that not many are happy to discuss. I wasn’t prepared for my personal story to be popular worldwide, and I haven’t decided if I want it to be world news!
For now, Chayse has given me the skills, knowledge and confidence to put myself out there. He is helping me to navigate the field of online dating as a pathway to meeting a potential partner.
But if I have no luck, I’ll be asking the NDIS for a bigger budget next year.
Today I caught a bus. So what’s so unusual about that you ask, when millions of people all around the world do it everyday!
What makes it unusual is that I was able to catch a bus because the infrastructure, the bus and the bus stop were accessible to me and my wheelchair.
I was able to catch a bus, go out for dinner and on to see a movie. That is freedom, that is choice and that is control! I am the master of my environment in this small way in this instance, when all the stars align or more pointedly when government, bus companies and councils work together to make sure that transport is accessible to everyone.
This occasion was anomalous, not the ordinary and certainly not something to be taken for granted. There are thousands or at least hundreds of variables that stand in the way of this being an ordinary, everyday occurrence for all people with disabilities.
The Bus Stops. Their placement geographically is a variable that cannot be ignored. If the bus stop is on a steep gradient on a street then the bus ramp is inoperable and/or dangerous to use. This stops people with disabilities using the bus.
But I have seen wondrous engineering skills implemented to ‘fix’ this situation. Bus stops with elevated and flattened boarding points on the street. So really the only impediment to all Bus Stops being accessible is funding and skilled engineering.
The Bus. As yet we still do not have 100% accessible transport in this country. In some areas it’s close, but even 1% or 5% of inaccessible buses can mean someone is left on the side of a road because they can’t get on. They are unable to access their community and their lives are not the same as those who can easily hop on that bus.
The Other Passengers. Those seats with the little wheelchair sign are dedicated for PWD, not crabby teenagers, or lazy people who like the first seat they can find. The other day I was on a bus and a young man was busily playing on his phone as I tried to manoeuvre into the wheelchair section of the bus. He occupied one section, sprawled on his seat. He either didn’t notice the amount of times I had to reverse and go forward, reverse and go forward and still be unable to get into the space or he didn’t really understand that he was impeding my access. I gave him the benefit of the doubt. Maybe he had a disability. However, when his stop came and he bounced off the bus I was crabby.
So, young man on the 501 to North Hobart, check your privilege and also (unlike toilet seats where you put them down after using as a courtesy) return the bloody bus seat to an upright position. Have you ever tried to lift those seats up from your wheelchair? Often all six of them? It’s hard and can’t be done without assistance. So people please make sure those seats are put back up again. In Melbourne I have noticed that the seat automatically returns to the upright position once the person leaves their seat. Food for thought Transport Tasmania?
The wheelchair. It has become a ‘thing’ where well meaning professionals prescribe wheelchairs that are great at home, at the theatre in many other situations – but they are large, heavy and are not suited to travelling on a bus. So whilst they may well be extremely comfortable to sit in at the theatre, the act of getting to the theatre may be another story. If it’s too big for a bus, or if I don’t have transport of my own (such as a custom car or van), then is it really fit for purpose? Is my life really better off with it?
So it seems a missing piece in the consideration of our transport needs lies in whether our wheelchairs are actually fit for purpose and able to be used and transported. This is an issue for professionals, manufacturers and PWD themselves to advocate for more innovation in this space. We want wheelchairs that are fit for purpose and that easily allow us to access our communities. Make them lighter, more comfortable, more durable and suitable to use on public transport. There should be NO compromises. You should not have to give up catching a bus because your new $20,000 wheelchair is not fit for purpose and possibly requires you to access an additional $75,000 because you need a purpose-built van to carry it and this van requires an additional person to drive it – further diminishing your independence and adding to your cost of living.
As you see the price of freedom has many and varying costs, but none are insurmountable with greater thought, planning and engineering solutions. I want to continue to travel with my trusty, Green Card for all zone cost of $1.92. I want to save the environment by not using a car. I want to stop congestion by not taking up road space. I want to free up parking in the CBD and I don’t want to have to pay for it either.
I want my freedom at all costs.
How many times do we encounter people who view those different to them through a narrow view? Assumptions are made and perceptions born coloured by their interpretation of their own life’s experiences. Simply put, they see others subjectively.
It is most useful to learn how to view others objectively. That is, we are not influenced by personal feelings or opinions in considering and representing facts. It can be confronting and quite difficult to accept and to believe truths coming from very different realities to our own, but it is possible.
One situation the disabled community talk about a lot is around able bodied people asking inappropriate questions. The most common questions resemble “What happened to you?” The common response to this question is that it’s no ones business. Often this is because the answer involves private medical information. Information no one else is asked to divulge – especially to quell a stranger’s curiosity. Another reason this question is frowned upon is because living with a disability is all encompassing. Everyday activities like eating are not straight forward. Much planning is required. Since so much time is already given to these tasks, it’s the last thing we want to think about while we are working or enjoying the moment. The third important reason is that we may not be in an emotional place to talk about it. Our limits can be quite narrow some days. We may require every bit of mental focus for our task or simply trying to sit up can drain our energy quickly. And the fourth reason is due to trauma. We have often been ignored, ghosted, not believed or even abused for years. This takes a toll. Many of us have medical PTSD. Many have families who don’t believe them which adds to the impact. They don’t want to be reminded of that trauma nor relive it.
I think it’s important to discuss these trauma responses. Too often they are misinterpreted as anger or rudeness and understandably so. It is possible to tell the difference between a rude or entitled person and a trauma response for those who have been exposed to both. To those who, like me, have lived experience with trauma either as an individual and/or a supportive loved one, we know these responses make interacting with others harder for us and them. It is important we learn to recognise our personal trauma responses, then find tools to assist ourselves when confronted. This does take time.
I urge you to please be kind to yourself by validating your experience and being gentle and understanding of yourself.
The two rules I live by are:
#1: never explain yourself. Adequate Facts can be shared without going that far.
#2: Never take anything personally. Validate and own everything relating to yourself and recognise what does not belong to you. Let that go with the other person as that is their’s alone. I have noticed a difference in my life putting this into practice. For example, during COVID times I got on the lift at a train station. It was a small lift and my powerchair filled it. A woman entered it with me just as the doors were closing. Not only was she not wearing a mask and I was at risk, but she coldly asked an inappropriate question. I was physically doing poorly and didn’t appreciate the situation in the slightest. I felt she was brash and rude, but decided it best I did not make assumptions about her. While neither of us were warm and friendly, we also were not rude. She listened as I educated her of my reality and she did not sneer back like many do. Sneering happens when we take things personally – hence my second rule. I recognise that there are a number of causes for a gruff manner and I learned that judging her would have caused myself stress which I would have projected onto her creating an inflamed interaction. She had clearly experienced life’s harshness in some way herself. While I do use these questions to educate people, when I’m not well enough to do so, I either give a quick to the point answer or I tell them I am not up for a conversation today.
May we all learn what it means to be kind to ourselves and others especially with those who are different.
Hey everyone! 👋,
As someone who has lived experience with a physical disability, I know the day to day struggle of trying to deal with barriers to being heard and working towards goals. I know that many of you may be facing similar challenges, so I want to offer a few words of encouragement and support, as well as some tips for navigating the journey towards empowerment.
Navigating life through my 20’s and now 30’s with a physical disability was tough, there’s no denying it. I remember feeling like I was often on the defence and facing a lot of physical and emotional barriers.
Often things were overlooked by my able-bodied peers. Some of the things others can do, for me are impossible, or took a ridiculous amount of effort. To compensate, I kept working harder, kept trying to prove myself and often tried to hide my disabilities, the pain and feeling like a fish trying to climb a tree.
But as I got older, I realised that having a disability didn’t have to hold me back. In fact, it opened a world of opportunities for me to advocate for myself and to help others in similar situations. Embracing myself, including my disability, has helped me develop strategies, plans and aspirations that stretch me in directions that I never saw myself heading. As a young person I never once thought I’d be an advocate, a Specialist Support Coordinator or the owner of an organisation full of amazing people, assisting even more amazing people. If you speak up, and you dare to dream, your voice and goals can be heard.
One of the biggest steps I took towards empowerment was accessing the National Disability Insurance Scheme (NDIS). The NDIS provides support to individuals with disabilities, which can help you access the equipment, therapy and other supports that you need to live your best life. For me, the NDIS was a game-changer and I know it can be for you too!
Of course, even with the support of the NDIS, life with a disability can still be challenging. I still encounter barriers every day, like inaccessible buildings, public transportation and a lack of employment opportunities. But instead of letting these obstacles hold me back, I’ve learned to find creative solutions and to advocate for myself.
With the right people in my corner, the right funding and a different mindset, my life has changed dramatically!
Here are a few tips that have helped me along the way:
I hope that these tips help you on your journey towards empowerment.
Remember, you are not alone and there is a whole community of people out there who are here to support you.
With hard work, determination, and a little bit of creativity, you can achieve your dreams and live your best life.
PDA WA Associate Director Melanie Hawkes was recently involved in “The Lives We Lead Project” – led by WA’s Individualised Services Inc. and funded by WA’s Department of Communities and Department of Social Services.
Capturing and sharing video and photo stories of people with disability living in their own homes, this social media project works to provide the wider community with a better understanding of the contributions made by PWD and their day to day lives.
You can check out Melanie’s story by going to:
I would like to touch on this subject as many of us have a disability that can be seen – whether we are in a wheelchair, wear a prosthetic, walk with crutches or some other walking aid, have noticeable hearing loss, an obvious vision impairment or another form of physical disability.
Some of us have may have more than one physical disability. Some of us may have a condition yet to be diagnosed. Some of us may be impacted by loneliness, frustration or even depression brought on by disability. Some of us may have transitioned from able bodied to living with a physical disability later in life or we could have a disability from birth that slowly progresses as we get older.
Many of us have to learn many skills all over again or learn new skills and this can lead to other problems as I listed above. I do not want to single out any disability here, just to touch on other issues.
Not so long ago there was not much assistance available that enabled us to cope with our changing lives as we began our disability journeys.
I was recently on the panel of two Physical Disability Australia webinars (“Acquiring Disability Later In Life” and “The impact of physical disability on Family, Friends, and Relationships”). Involvement in these reminded me how important it is to be informed, to be able to share experiences, to be accepted and to harness the power that comes from these crucial tools.
If you haven’t yet watched these webinars, I encourage you to click on the above links and visit PDAs YouTube channel.
Despite disability related problems varying from person to person, our complete needs are often not considered when we require services such as helping us with our shopping, personal care or even help around the home.
Getting out is important and we can have support workers for this as a one-on-one, but some of us only get limited hours for this. What about meeting people and doing activities in a group environment? There are many sporting groups for people with physical disabilities and these are great if you like playing sport or want to try out a new one. But what about those of us who do not like playing sport or those of us who are getting older? Some of us like touring, sightseeing, visiting tourist attractions, going on holidays – all of which can be done one-on-one with a support worker if funding permits. This is fine for some of us. Many of us do not need one-on-one support 24/7. We just need support when things get tough and that’s where a group-based activity can help. These groups have support workers who are there if needed and you can meet people and do what you like to do at the same time – which can help if you are lonely and isolated. Many group-based outings are not made available to people with a physical disability, only those with a mental or intellectual disability. This is a great pity. Whilst people with a physical disability can be independent, some are not.
Group-based outings would be great for them to get out. To be with people, to access the community, to widen their worlds by visiting attractions and to enjoy the company of others. Physical disabilities can vary greatly, but we all have the same needs, wants and rights to enjoy life – in spite of difficulties.
I live on my own and am quite independent, only needing support workers for some daily tasks and assistance when in the community. I too need a break from the mundanity of life that so often accompanies disability. To get out and enjoy myself touring, not having to worry about getting my meals, arranging transport or finding accessible places of interest and accommodations. A group-based activity organisation does this for you. Many people with physical disability do not have funding in their plans for STA or group-based holidays or activities. I think greater emphasis should be placed on the importance of these and the benefits that come with such opportunities. They should be included in our NDIS plan reviews as part of our mental health wellbeing which I feel is part of the what the NDIS is about.
The most terrifying experience of my life was the day that my voice was taken away.
For most of my life I have lived with paralysed vocal cords. If I was a horse I would have been shot! In horses it’s called roaring and means they struggle to breathe and make a noise like they are roaring for breath and that’s exactly my experience. Most people breathe through a nice big fat airway like a hose pipe, with me it’s like I breathe through a piece of spaghetti, dragging each breath in slowly and using all my energy to do so. It feels horrible and sounds horrible and basically it is horrible, but I have learned to live with it.
Then came Covid-19. I contracted it in April. My spaghetti pipe was congested, but somehow I coped ok. Then the next month came, along with virus number two and then virus number three.
I presented at the ER every day for four days, unable to breathe and really struggling. The ER doctors finally wrote a referral to my GP to ENT services in Hobart. After some issues with miscommunication, the referral was sent through. Two weeks later I was in Hobart’s Specialist Clinics.
My lovely ENT doctors Raj and Nicco were like excited children when they looked down my throat with the scope. Like I knew I was bad and had been getting worse with age and since covid, but I had no idea that it was that critical. I was breathing through an airway space of about 2mm and my vocal cords were static – neither opening or closing as normal vocal cords should.
I was categorised as CAT 1A which is basically top of the list of elective surgery and was told I would be operated on within a month after some other tests were completed.
So on the 5th October I presented at Wellington Clinic for my pre-admission. I spent the next day and a half trying to have as much fun as I could, which also included getting a guardianship order to give my daughter power of decision making if things didn’t go well. Not the state guardianship orders, but my own private lawyer drew them up. Something that I suggest everyone should do before something huge like this.
At 6.45am on Friday 7th October, I presented for admission and at about 11.30am I was sitting in recovery drugged to the eyeballs – breathing like a marathon runner but not able to speak. My voice was gone. The operation of which I had consented to save my life involved cutting a section of my vocal cord to make the opening to my airway bigger. For this to happen and for recovery I was given a tracheotomy. I now breathe through a pipe in my neck. This will be temporary as my vocal cords heal.
So what happened next?
I have a second language. I use Auslan (Australian sign language) – the language of the Deaf. So as soon as I woke up from surgery I defaulted to sign. Many people who have a second language do this when they are unable to communicate in their first language. The thing is not one of the hospital staff could sign AT ALL.
The more I couldn’t communicate, the more frustrated I became. I am an advocate. I self advocate and I advocate for others. Communication is part of my being – as it is for everyone. Can you imagine what it is like to wake up with your voice is gone? It’s like your autonomy is gone. Things happen to you rather than you having a say and being able to ask questions. The fear is real. Your control is gone and you are helpless.
I was given a communication whiteboard early on but, as my frustration levels increased and my fear escalated (especially after the drugs wore off), my handwriting became increasingly hard to read. It’s funny as when I did a prac on a prep class they actually told me my handwriting was terrible. Out of the mouths of babes!
I continually asked each new nurse, doctor, physio, speech therapist, dietican if they could sign? They could not. By day two my daughter was coming into ICU , interpreting regularly. She grew up with Deaf kids in her class throughout her schooling and of course I have signed with her throughout her life. On one occasion she sat and interpreted for 4 hours straight. Relaying my fears and anxiety to the nursing staff.
It wasn’t until day 8 post surgery that a professional interpreter was booked to come. I was to have my tracheotomy changed and she was able to voice all my concerns that I signed to her about what was going to happen. I could have cried with gratitude. I could sign, “ouch that hurts” as the procedure went on! She was there to be my voice and I could communicate freely again.
Coincidentally that night a young Doctor, Dr Dave, came to change my cannula and he too could sign. However, he was from Ireland so his signing was like the difference between German and English. But he understood and had seen how vital sign language was for his sister at home in Ireland using sign language. We had a good chat with writing things down and mime.
After working as an interpreter for the Deaf for the first 16 years of my Education Department career, and being involved in the Deaf community, like most people I still only had an empathic view of what it’s like to not be understood. Of having your means of communication not understood by the wider community, of the discrimination, the miscommunication, the lack of control and the loss of autonomy. Like them, things happened to me rather than my being involved in decision making with a clear understanding of what was going on. I couldn’t ask my questions freely. I was silenced.
This experience has taught me so much! Sign language needs to be a part of our health system. There needs to be charts of key word signs in each room with words like toilet, food, drink, pain, yes and NO! There needs to be more access to interpreters in ED. Imagine coming into ED and not being able to communicate your needs? There needs to be sign language classes built into nursing courses at University.
The benefit of this is that student nurses will see what it’s like to be from a background where English is not your first language. It’s not just the Deaf who use sign language. Many people with intellectual disabilities also use key word sign, just like Dr Dave’s sister in Ireland. Lastly, we need to introduce sign language to practising nurses on the wards. We could run some classes. Heck I’m up for it! If just one nurse on a shift had at least the basics of sign, imagine what that would have done for me and for my comfort during my hospital stay. So I plead with government to listen to my story and move forward with a plan to make communication more inclusive for Deaf and intellectually disabled people in hospitals and for people like me. My experience was only for 8 days, but those 8 days were the most terrifying and frustrating time of my life. My voice will come back, but the lingering memories of being isolated and alone will not leave me.
A close friend, ally and PDA member, Clare, attended the 15th Conference of State Parties to the Convention on the Rights of Persons with Disabilities (COSP) at the United Nations Headquarters, New York, from 14 to 16 June 2022. At the conclusion of this she was sent an invitation to attend the APMCDRR in Brisbane.
She was very excited about COSP and tried to explain to me what it was about. I didn’t really understand, so she said that we must go to Brisbane together and then I would get it.
Taking her on her word, we booked flights and accommodation and headed off.
Well, what I saw, and what I experienced was mind blowing.
On Day One we were invited to attend a networking session and meet people with disabilities from all over the world. We were asked to attend a meeting to discuss the Mid Term of the Sendai Framework for Disaster Risk Reduction (DRR), https://www.undrr.org/publication/sendai-framework-disaster-risk-reduction-2015-2030 which is a great read on its own. I was able to talk on behalf of PDA and the work we do in Australia and how it fits into the framework. Thanks to Queenslanders with Disability Network (QDN) and People with Disabilities Australia (PWDA) for hosting a fabulous lunch.
Day 2-4 saw meetings and discussion on topics such as:
I got to meet some very motivated people from all over Asia Pacific including Setareki Macanawai, the CEO of the Pacific Disability Forum from Fiji, John from the Tongan Disability Advocacy Network and Kepueli Ngaluafe, a very recent amputee from Tonga who works in the Ministry of Finance.
The days were full, but for me, the real work was done at night. I had the opportunity to share PDA with some academics from the University of Newcastle, the University of Melbourne, and the University of the Gold Coast. All of them are keen to connect and, hopefully, do some paid collaboration with us around DRR for our PWD here at home. I got to meet some fabulous people working in DPOs in Australia, some folk from AFDO (Australian Federation of Disability Organisations), some folk from WWDA (Women With Disabilities Australia) and some amazing people from QDN.
I would try to explain what this it was like to be at this conference. I have been to way too many conferences, but this was so worthwhile and I can see great things coming out of it for PDA, for PWD and for the whole of Australia.
When it rolls around again, who is coming with me?
I guarantee, you will not be disappointed.
I received my first power wheelchair when I was three years old (almost 40 years ago).While it is a struggle some days (when my support worker can’t come to get me out of bed, for example), it helps to have a positive attitude. There’s no point complaining about what I can’t do. My parents raised me with a can-do attitude, and I am grateful for what I have.
I don’t need pity. It’s not a “shame” or “a disaster” (an actual comment from someone recently) that a childhood illness paralysed me from the neck down. I am fortunate it happened before I turned two, so I don’t know what I’m missing. My wheelchair doesn’t confine me. In fact, I quite like having a physical disability. I have a great life.
There’s actually many advantages of having a wheelchair. So many, that I compiled a list:
There is plenty to love about having a physical disability. I’m grateful for all my support workers who help me with the things that I can’t do, and for the NDIS that pays for them.
Can you think of any others?
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.
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