My faith and my disability

Claire Shanks shares about some of the highs and lows of being a Christian and being disabled.

Learn about her views on healing and the barriers she faces from other people, in this talk at a Livability training day looking at the church and disability.

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Firstly, let me introduce myself. My name is Claire Shanks and I manage a support service for disabled students at the University of Sheffield.

I must admit, when I was first asked to talk today about my disability and the impact it has had on my faith, I thought what a great opportunity to talk about empowering disabled people, especially those involved in the Church. I could spend so much time talking about the models of disability, inclusive use of language, etc. Then I realised that I had to talk about me! I am normally a very private person when I comes to things like this but then this gave me the opportunity to focus on the impact my disability has had on my life.

I was an average healthy teenager who had commenced a degree course in teacher training. A lifelong ambition I had had from a very young age. I was full of enthusiasm and excitement at the thought of coming ever closer to fulfilling my ambition. I started my degree a year later than my peers after a gap year in 1997 at the University of Surrey Roehampton, based at the Catholic Teacher Training College Digby Stuart. However, my life was to take a turn later that year. I was coming up to the summer exam period in 1998 when I first fell poorly with what they thought at the time was meningitis. After a period of hospital admission, I had been diagnosed with viral encephalitis, swelling and virus on the lining of the brain. My everyday normal life that I had experienced for the previous 19 ½ years was to change completely. I was left with neurological symptoms, peripheral neuropathy, memory and concentration difficulties, and difficulties walking which has left me permanently needing walking aids and use of a wheelchair.

It is hard to imagine how you would react to this happening to you and looking back I can’t quite believe how I managed to hold it together and carry on with life as if nothing had changed. My initial reaction was, ‘well if this is what God has thrown at me, so be it’. I dealt with my illness and permanent disability as something which would become easier to deal with in time, when in fact, I felt I dealt with it better at the time than I have done in later years.

One of the biggest and hardest decisions I had to make was re-consider my career path. I knew within a short space of time, that I would struggle teaching especially as the age group was key stage 1, 4-6 year olds. I can remember telling my parents this decision and they said ‘but what are you going to do?!’. What was I going to do? I decided to continue with a degree in Educational Studies without the teaching element and would use the time to re-consider my career path. In my final year at University I stood for the position of Students with Disabilities Officer on the Students’ Union and to my surprise I was voted in! I used this position to champion support and adjustments for disabled students across the University as well as organising a disability awareness conference. Something I would not have done had I not been through what I had. I developed a new found enthusiasm and passion for supporting disabled students and knew this was where I wished to direct my energies. I applied for the post of Assistant Disability Officer at Brunel University in West London and was offered the post. I guess the rest you can say is history regarding my career. I have been employed within Disability Services for 9 years now and have gained so much pleasure from supporting students throughout their degree, overcoming numerous barriers and hurdles to reach their own potential.

I have to say that I have had to overcome my own barriers along the way. It has certainly not been an easy 11 years. One of the biggest issues for me was how people looked at me differently as if questioning my abilities and how come I can be studying at University, or working in the middle management position I now hold. I have felt that I have had to fight harder to stand my ground and get to where I am now as if I’ve needed to prove myself more than others.

Some of the barriers:

• Getting used to people looking at me differently because of my dependence on a crutch and chair.

• When I’m in my chair, I often feel invisible, people don’t see me as a whole person, they see the chair, not me

• People’s avoidance to talk to you because they’re anxious about saying the wrong thing

• Human curiosity – people only approaching me to ask me what’s wrong with me rather than how I am

• People’s use of language, assistant in B&Q calling me ‘cripple’ and local teenagers throwing an egg at my window and shouting ‘cripple’ through the letterbox

• In hindsight, I feel as if I made the decision to not teach because of people telling me I couldn’t.

My faith has always been important to me, but over the years I have asked ‘why me’, ‘what is it I have done to deserve this’. The reality is life is what it is. Most of the time, my view is, that God has given me an opportunity to help others in a way I might never have considered before my illness. I feel as if I’m actually living out the gospel and my faith. It has not always been easy. I have been through times when I felt too overwhelmed with feelings of not coping well with ‘blip days’ associated with my illness. There was a time earlier this year when I felt so far away from God and I felt guilty for this as He as always been there for me in the past. I was so overwhelmed I began to question my faith and wondered what I truly believed in. I stopped going to Church as I experienced the on-set of panic attacks during moving parts of the Mass. I needed to distance myself from God and not be hard on myself for doubting. It is at times like this that I ask ‘why has God made me feel so isolated, so vulnerable and alone and marginalised from society’. The inner pain I have experienced through these dark times has been immense but ultimately, despite the doubts it is my faith and believe in God that brings me out of the darkness into the light. Then I feel whole again.

My illness has certainly affected my confidence and self-esteem, especially with relationships. I often hear myself saying, ‘who would want to be with me’. I feel I would be putting so much on a man to spend the rest of his life with me, coping with the relapses and remission of my illness. I even feel the same with friends that I am in some way a burden to them. I think part of this is because that is how society makes me feel, partly through ignorance but also through arrogance and a lack of willingness to try to understand. I certainly feel a minority at times, even though I don’t like to admit that and the only thing that makes me feel whole as a person is my work and charity work. They have both enriched my life in more ways than anything else has.

I am also a Trustee of a charity called, HCPT – The Pilgrimage Trust. The Trust disabled and disadvantaged young people and adults on a pilgrimage holiday to Lourdes every Easter. There are many assumptions about Lourdes especially that every sick and disabled person who travels there is looking for a miraculous cure. What you learn is that the miracle is the healing that happens within each person, the smile on a child’s face or a barrier that has been broken down. You begin to realise that people do not go to Lourdes to be cured but to be healed.

Lourdes is not just for the children and adults but the helpers too. Jean Vanier in The Broken Body said, “If you enter into a relationship with a lonely or suffering person, you will discover something else. That it is you who are being healed. The broken person will reveal to you your own hurt and the hardness of your heart, but also how much you are loved. Thus the one you came to heal becomes your healer”.

I am often asked what Lourdes means to me. Lourdes to me is a place of peace, learning to love and value others but also a place where I have learnt to accept myself. Lourdes has given me the opportunity to accept my own disabilities and what I can achieve instead of what I can’t do. Lourdes has given me another purpose in life to help others through the work of HCPT and through my professional work.

People always ask me what draws me back to Lourdes every year and often this is a difficult question to answer because it is so hard to describe. Lourdes is a place where people live out their faith and every moment I share with the helpers and children is so precious, whether it be every song we sing, every laugh, every tear, every game on the prairie, every smile. Children open up a whole new world to us as adults, their acceptance of their vulnerability and dependence is remarkable. The children teach us so much about how we should live our lives and about how we as adults should accept our own vulnerability in order to better understand the needs of others.

Claire Shanks, 2009