Equal not special is a community of people who celebrate life’s diversity.Our contributors are:-
ekie is a twenty-something disability advocate who considers herself more of a New Englander than an American. She has a non-verbal learning disability, NLD, with a side of depression, anxiety, and sensory processing disorders. Her interests include disability rights and advocacy, reading, walking, dogs and children. Although she recently completed her master’s degree in disability advocacy, she is currently unemployed, so if any readers have connections to jobs in the disability field in the Boston area, she would love to hear about them and from you, as well as from anyone who cares to chat. AIM name: Ekie84.
My name is Karen and I’m 24 years old and I live in Australia with my parents and dog whose name is Flea and some goldfish. I attend the local TAFE, and university. I love to read and write, watch movies, listen to music and I’m a motor sports fanatic. My favourite colour is purple. I have a type of cp called Spastic Quadriplegia. it affects my legs mostly and also my arms to a lesser degree. I am not affected by the CP intellectually in anyway although there seems to be an automatic assumption by the community that I am- that’s a post for another day. I use a wheelchair to get around all the time and have both an electric and a manual chair.
Sometimes, your worst fears – when realised – are not so bad after all. Life changes, but not always in a negative way. Terriblepalsy writes about a family coming to terms with having a child with a physical disability and the journey along the way …
My name is Jodi Devine and I am 32 years of age. I live in Sydney, NSW, Australia. I am a proud mum to Thomas Linton Devine who was born prematurely at 28 weeks in February of 2005. He spent a total of 105 days in RPA’s NICU. Thomas had many problems and continues to have issues today, primarily his bilateral hearing loss. The hearing loss was diagnosed through the State Wide Infant Screening Hearing SWISH test which he failed twice, resulting in an automatic referral to a children’s hospital for an audio brain-stem response (ABR) test. He was initially diagnosed with a severe-profound hearing loss which was eventually ‘reduced’ to a severe loss and now it is moderate.
I struggle with coming to terms with his hearing loss EVERY DAY (as well as his height, weight, gross-motor and fine-motor skills, his vision etc). I over analyse EVERYTHING he does and I mean EVERYTHING.
I am also a primary school teacher in the public system and last year, after nine years of classroom teaching, I moved into the area of learning difficulties and took on the role of Support Teacher Learning Assistance (STLA). I cried almost every day in the first term. I would watch students and think, “How will Thomas cope with this when he reaches school age?”
But life goes on and Thomas is living proof of that for me, reminding me to take each day as it comes – however hard that may be.
I live in Brisbane, Australia, with my husband and two children. I have a 9 year old son and a daughter who is almost four. Due to complications with her birth my daughter has Severe Quadriplegic CP. After the delivery it took the medical team 10 minutes to resuscitate my beautiful baby and on day five she was diagnosed with CP by an MRI. She spent 10 days in NICU (5 of those days on a ventilator) and then 2 weeks in Special Care. The Head of NICU told us he doubted she would live past 3 months but it is almost 4 years on and she has changed our lives in a way we could have never imagined. There have been many difficult times along the way but the good times definitely outweigh the bad. I would say that the hardest thing in dealing with her disability is lack of support, equality and inclusion.