Welcome To My World!

15. Jan, 2018

 

Every now and then there comes along a song that touches you deeply and speaks to your soul and sends you to tears. When I came across the theme song to ‘The Greatest Showman’,  my body had tingles from head to toe!  Kaela Settle sings ‘THIS IS ME’ at the Green Light Presentation (see link below) before the show was to be approved.  I could tell from the emotional performance this song was as significant to her as it was to me as a woman growing up with Cerebral Palsy. This song resonates with me in a deep and personal way; reminding me of the journey I have travelled and still travel today!

I remember as a little girl mum would take me to various ‘healers’ and ‘psycho-surgeons’. She was in search for a cure for Cerebral Palsy but as a young girl this left me traumatise and feeling  like a burden; that I had to be ‘fixed’ in order to be acceptable to my parents and to the world. We also travelled as far as San Francisco, California in 1980 because mum heard of the newest hope for a cure at the Palo Alto Clinic. Now, please I want you to know that I love my parents. They did their best with all they knew at the time. What parents would not try to improve the quality of life for their children?

And then later when I became a Christian, the majority response to my Cerebral Palsy I received from the Christian Community was that I had to be ‘healed’ and again ‘fixed’. Several strangers off the street ‘felt’ God say to them they should approach me and ask if they could pray for me. Well meaning pastors also wanted me out of my wheelchair when all I asked was healing for the arthritic pain I had that day! So then I began to hide my pain, my weaknesses and my shame for not being perfect. I need to clarify that I do believe in the power of God to heal. We are told we can ask for healing in the Bible (James 5:14-15). But we need to approach this holistically, not only so that they are healed dramatically from their disability and therefore all will be good from then on.

Also as a young fifteen year old my desire to leave The Spastic Centre and mainstream into my local high school was met with disapproval. I wanted to experience the real world; out there. But I was only confronted with people who kept giving me reasons why this was not a good idea. Doctors told me that mainstreaming would deteriorate my physical well being as I would not have access to therapy. Teachers (one in particular) told me that I was not intelligent enough to do the HSC. Another teacher told me if I did leave The Spastic Centre, it would be my fault if it should close down. Two years later I had to deal with the guilt when it did finally close down! The principle at the local high school said I would be accepted into Year 11 the following year but as far as providing accessibility around the school, I was on my own! (This was pre Disability Discrimination Act of 1992 so the school got away with this one). Even my parents, with all good intentions said it would be better to not ‘lose the security’ of The Spastic Centre. And when I was accepted into my local high school my dad told me not to buy my uniform until I was sure I was going to ‘make it’. (So, the next day I went with mum and bought my uniform!) The social worker from The Spastic Centre and my two- year-old relationship with Jesus Christ seemed like my only allies at the time.

Even today when I interact with my world there are still subtle messages I receive everyday telling me ‘I do not belong’, that I am a financial, physical and more significantly an emotional burden. If some people had to confront my disability and my needs then they would have to confront their own weaknesses and limitations; and that’s not an acceptable thing in our society. Just today I visited my petrol station. I was not able to enter their shop as the only ramp they had was blocked by the gas cylinders they placed there. Athena then had to put on her ‘self-advocacy’ hat and, in a polite way, suggest a small ramp to be placed so I could access it on my own, when I wanted. One man saw my dilemma and asked if there was anything he could get me. That was a kind offer but what about when he is not there? When no one’s around?? What then? But there are days when Athena just doesn’t want to put on that hat! It is a tiresome journey sometimes and some days I just want a society that is accessible both physically and attitudinally. I don’t want to be forever fighting for equal rights. I just want to be welcomed and accepted as me because THIS IS ME!

“The Greatest Showman”  is the story of a group of people that our society has not accepted and welcomed into our communities. The bearded lady, the tall man, the short stature man, the black man and the man who was brought up in poor circumstances. They are looked upon as unworthy, weak, different. They are ‘freaks and spooks’ looking for love and acceptance; looking for a family which in the end R.T. Barnum manages to create. A person who he himself rose from nothing to creating a show that showcased the difference of these people as a ‘celebration of humanity’.

I don’t care what walk of life you come from, we all carry our scars, our pain and our shame. We have been taught to hide all this because we believe we won’t be loved and accepted. For you it may not be a physical disability, it could be that you are choosing to hide from others because of you live with depression? Anxiety? Or an eating disorder? Or maybe you are choosing to stay in the closet because you believe you will be hated and judged if you came out as a member of  LGBTQI community? What ever it is we believe it is better to hide than to take a risk of rejection than to stand out in the crowd.

“The Greatest Showman” is the story of all of us, that is why I believe it is such a universal movie. We all have broken parts we carry. But it is through these broken parts that turn us into ‘warriors’. There came a day when I decided to not go to any more healers. I took a risk to say I am ok with how I am and THIS IS ME and its OK. And fighting for my place in my local high school was a hard battle but it was because of the bruises, I learnt to be brave and that is what turned me into a warrior. That is what turns us all into warriors; when we risk everything to stand out in the crowd.

How are you going to respond to the sharp words that cut at your soul; that tell you you must hide because you are different? What will you choose? Will you allow them to drown you or will you bring on a flood of courage and drown them all out and not be scared to be seen. Will you stand tall and say THIS IS ME??

26. Dec, 2017

 

On the 6th December 2014, three days after International Day of People with Disabilities, Ms Stella Young; a disability activist, advocate to young people with disabilities, a comedian, TV presenter, journalist and self professed atheist passed away. She lived her life with Osteogenesis Imperfecta. As a person with a disability I admired Stella’s fiery gutsy personality standing up to injustices and discrimination against people with disabilities; breaking through stereotypes and myths. Stella challenged me in very profound ways!

I was disappointed I wasn’t able to get to her memorial service in Melbourne and celebrate with my disability community such an amazing and influential person in my life. So instead, I viewed the service while streaming live on the ABC network in between my medical appointments on my mobile phone chewing up all my data! I was determined to not miss such a significant event!

At the memorial service in one of the eulogies given by her comedian friend and colleague, Nelly Thomas. Nelly quoted Stella saying about organised religion I lost faith in God the day I found out there was a stairway to heaven.” Now I know this comment was part of her comedy gig routine but I felt an underlying disappointment and even anger from Stella toward churches that seem to be only accessible to the ‘able’ community.

In another eulogy by Bryce Ives, Bryce quoted Stella saying about Heaven, “If you can’t provide access then I’m not coming to your party!”

When I heard these two quotes from Stella my heart broke! I do not know what Stella’s personal faith journey was like but I was sad to hear she had only negative experiences from the Christian community.

But there was another part of me that said, “Well hec yeah! I wouldn’t go to the party either if the church wasn’t accessible!”

I commented to a minister of a church I was visiting once that if he had a permanent ramp into his church he would find more people in wheelchairs might decide to come inside. His response, ‘If we see more people in wheelchairs that want to come in then we will put in a permanent ramp’ He totally missed the point I was making. An inaccessible church sends me the message, ‘I don’t belong and I am not welcomed’.

In Luke 14:21 Jesus instructs us, “Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame”

 If Jesus instructs us to ‘bring in the poor, the crippled, the blind and the lame’ we as the Christian community need to make sure that at this banquet, this PARTY we are inviting people with disabilities to, that people in wheelchairs and physical disabilities are able to enter and access all areas of our church, that people with intellectual disabilities understand, that people who are blind see and those who are deaf hear, those living with mental illness feel understood and accepted and those on the autism spectrum are not distressed.

Question: Why don’t our churches have a Disability Ministry Worker?? We  have ‘Youth Worker’s’ that specifically focus on the needs of our youth. A ‘Kids Ministry Worker’, a ‘Men’s Ministry Worker’, a ‘Womens Ministry Worker; even a ‘Singles Ministry Worker’ Such groups are needed so as individual and specific needs get met in a way that are not met within a whole congregation setting. So why is it so rare to see a ‘Disability Ministry Worker’ in our Churches? Every now and then I do come across a church who do focus on disability issues but that is because the Senior Minister or Pastors’ own daughter or son was either born with a disability or acquired a disability through an accident which has forced them to look at disability and how it all fits theologically. The good news is that we don’t have to experience such a personal tragedy to make us see we need to make our churches accessible to people with disabilities even though I know that is how God sometimes works.

I strongly believe that education on disability and theological issues all need to start from the top if we are to see a fully inclusive church. From our theological colleges who as part of their ministry degrees have implemented disability awareness-training. So when ministers, pastors or priests go off and lead their own churches they are equipped with how to meet the needs of people with specific disabilities and how to view disability personally and theologically.  This then will filter down right through the rest of the congregation. I believe when we all have a healthy biblical theology of disability this will significantly impact, how we perceive people with disabilities, how we welcome and embrace people with disabilities and how well we implement inclusive practices throughout our services and church activities.

To quote Stella Young from a letter she writes to her 80 year old self ‘… I was not wrong for the world I live in. The world I live in was not yet right for me”

How do we make our churches right so that people with disabilities don’t feel ‘wrong’ and don’t belong as part of the Body of Christ? Does your Church or Christian community have a ‘Disability Ministry Worker’? How is it going? Are you studying at a theological college that has a focus on disability? If you have/or have a family member with a disability, what has been your experience of Christian community and what would you like to see changed?

I would love to hear your thoughts and your stories on this particular subject so please comment below.

21. Dec, 2017

Hi and welcome! My name is Athena and this is my first post. The goal of my blog, “Welcome To My World” is to share with you some of the insights I have developed as I have had to navigate within this world as a woman with cerebral palsy. I will aim to bring you a glimpse of my world in the hope of making us all realise that we really do come from the one world; the world where deep down we feel the same longings, desires, dreams and goals.

This blog will bring both Objective Knowledge and Subjective Experience in my everyday tasks and experiences. I will cover such topics as Family, Employment, Disability and Sexuality, Disability and Theology, My Journey on the NDIS, Mental Health and Social Issues. This is a blog about disability through my eyes and life. But I hope this will also generate conversation and/or even debate! I am not claiming to know everything about disability. This blog comes from my personal perspective; this is my story but  I look forward to connecting with you, starting a dialogue and even hearing your stories.