I have had to fight to be seen as able from the moment I entered the world. My mum has spoken to me about the day I was born numerous times. She fought through infertility treatment from the age of 18 to 21 to conceive me. She had a regular pregnancy, and all appeared healthy. She labored normally and moments after I entered the world lifeless, she was presented her revived newborn with the words “I have to show you THIS” before I was taken away to the neonatal unit. “THIS” was my arm.
I was born with Amniotic Band Syndrome (ABS) which occurs when fibrous bands of the amniotic sac (the lining inside the uterus that contains a fetus) become entangled around a developing fetus. This manifests differently for each individual and mine that appears like a below the elbow amputation. I have movement in the very end of my arm, and I have 5 little fingers. I imagine it as a pre-stage of a hand as the amniotic band wrapped around my developing forearm. The collective term for the outcome of this condition, along with 50 others, is Limb Difference.
My mum did not see me for days whilst the medical team tested me for various other conditions. Meanwhile I was told that my Dad was informing the family of my grim prognosis – I would have a poor quality of life, I wouldn’t hit my milestones, probably have learning difficulties, I was disabled. This was a very damning statement 30 years ago when disability representation and education was almost nonexistent.
There were two strong camps within my life from the moment I was born, and they remain. Firstly those who believed that I would be able to do anything I wanted to. The people who understood that I was not defined by my limb difference but it was one part of me. The family members that made me feel seen, heard and supported me with the tasks that I found frustrating. For them it was not that I would achieve despite my disability but with it.
The second camp was vastly different. My disability was at the forefront of everything. I would need all the adaptions available to me, I would be unable to participate in activities my peers were enjoying. I would not lead the typical life. Unfortunately, it was even stated that I was a punishment from god delivered to my mum who was an atheist. Knowing this I always felt that I was loved despite my disability by this individual. A curse on the family.
I was prescribed prosthesis from the age of 6 months but I was stubborn and refused to master the use of them. I would spend ages with the contraptions stuck to me, trying to use cutlery to cut food up, uncomfortable and feeling more disabled than ever. I just wanted to do things my way but my parents were told to persevere. It took me to the age of 12 to completely draw a line under my prosthetic journey and tell my parents that I was not going to waste any more of the NHS time or money.
Growing up with a limb difference certainly makes you resilient and for me I learned to have thicker skin early on. I think this initially made my teen years seem easier than expected. School life was the usual experience and I was fortunate enough to not experience any bullying which I know was a particular concern for my parents at the time. I would always enjoy proving people wrong when it came to them limiting my abilities before I had even attempted an activity or sport.
On the surface all was going well, even to me. But then I started adapting behaviors to try and conceal my difference. The overwhelming want to blend in and be normal suddenly hit me and I internalized it. In the midst of the introduction of social media and being bombarded with images of slim, non-disabled, beautiful celebrities, I did not fit in. I was not the norm therefore not enough.
In order to attempt concealing my difference I would NEVER leave the house without a long sleeve. I would carry myself with my arm so close to my body that it would almost vanish. At times this became an issue because I was caught short without a long sleeve and then refused to go out in public missing out on trips or socializing with friends. Although it’s hard to believe in England, sometimes it would be too hot for jumpers and coats but that wouldn’t stop me layering up, this resulted in heat stroke on several occasions. This space in time is hugely apparent due to the lack of photos of me as a teen.
The introduction of social media (yep, I’m that old!) and lack of role models for those with differences of any kind all added fuel to the fire. I became extremely introverted, developed an eating disorder and my social anxiety was out of control.
There was one saving grace and it came in the form of a best friend turned boyfriend. Now I’m cautious attributing my self-acceptance to another person or saying that it was a boy who ‘saved me’ as that’s very Disney circa 1940’s… however, it is the support and unconditional acceptance that he gave me that truly pulled me from that hole. For anyone who does experience a similar issue with their mental health you will know that simply having that safe place where you can voice all those internalized thoughts and feelings is priceless. To hear those thoughts and all the negative self-talk out loud enables you to challenge the level of truth within them.
I said I had never experienced bullying but that is a lie. I bullied myself for years. I told myself I was not worthy of being liked, accepted, loved and all for what… because I didn’t fit in a box society labelled as normal.
The internal battle around my self-image ruled my life up to the age of 25. I have always had a fire in me, a stubbornness that has been evoked when I am told I cannot do something, or my ability is doubted. But equally always had a strong lack of self-worth and very aware that society is set up for the non-disabled. This conflict impacted every aspect of my life. I believed I would never have a person attracted to me, never be loved, never have a family, never be a good mother, never be successful. Even at my wedding I asked the vicar if we could swap the traditional stance of the woman standing on the left during the ceremony so that I wouldn’t have my arm visible to my family or in my photos because I believed that a bride shouldn’t have one arm.
Then I had my son, and everything changed. I looked at this little life I created, and I reminded myself that I am able. I am loved, worthy, a mother, a valuable member of society, a woman and I have a limb difference. All these things can co-exist together within me. There is no shame or apology to be made for my existence. Looking at my son I did not want him to grow up seeing his mum struggling to love herself nor did I want him to grow up in a society telling those who are different that they are not worthy.
With my almost 30 year old head I look back at this 15 year old me and I think what is it that she needed? What could have prevented this unnecessary pain that lasted years? The answer is simple. She needed representation. She needed to see others out there getting on with life who don’t fit in that pre-set box society calls ‘normal’. People who don’t care what others think and challenge the misconceptions and stigma around disability daily.
I want to be the person that 15 year old me needed. That’s why I started The IAMPOSSIBLE Foundation. A foundation lead by the limb different for the limb different. Our team believes that through increasing visibility, creating a community, information/resource sharing and events we will equip and empower individuals with limb differences to challenge perceptions of ability and overcome obstacles put in place by the ablest society we find ourselves in. Since starting in 2019 our reach has become international with 30 Ambassadors world wide all supporting our mission.
Our aim is to give limb different individuals and their families the resources to confidently take up space in a world built for non-disabled people. To live the lives they want without fear of standing out and embrace their limb difference as a part of who they are.
Our journeys are all unique and mine has brought me full circle back to where I was when I entered this world. I have the innate knowledge within me that I am able, and no one will be able to take that from me, not again.