Independent Living - Janene's Story

Kia Ora my name is Janene, I am a wife of 15 years and mother to two young daughters.  At the age of 4 and ½ years old I caught a virus that attacked my spine and left me paralyzed from the waist down T10 leaving me wheelchair bound for the rest of my life.

Later my whānau and I were told that the virus was called Transverse myelitis which is an inflammation of both sides of one section of the spinal cord. This neurological disorder often damages the insulating material covering nerve cell fibres (myelin). Transverse myelitis interrupts the messages that the spinal cord nerves send throughout the body.  Or in other words explained to us, “a freak unfortunate accident!”

I was raised in mainstream schooling that in itself faced many challenge’s I was often the only disabled child in my school that at times buildings, toilets, schooling equipment etc were not accessible. My mother had to fight for everything that I needed to make my world accessible; toilet seats, wheelchairs, ramps and the list goes on.  I say fight as there was little to no help given to her as a young mother raising a child who went into hospital walking and left paralyzed no longer able to walk, wheelchair bound.

Now that I am a 37 year old a Māori women with a family of my own I see what my mother so desperately had to fight on a daily basis at times for a world that I could live independently in my future.  I find so many challenges and here are just a small few that I face living in society independently in 2018: 

  • Shops - are often wheelchair friendly but not accessible. BJ's bakery for example, I can’t independently access the door when it is closed because it is not wide enough for a wheelchair.
  • Parking - whoever allocated the parks don’t actually consult with those with a disability and ask for their opinion and advice from a user point of view. The majority of parks in town do not cater for all disabilities, like wide parking spaces for hoists or getting kids out of the car if the parent is wheelchair bound, such as when I’m shopping with my kids independently.
  • Concerts - I am unable to purchase cheaper tickets due to my disability and accessibility needs. I am also unable to attend a concert and sit with my children as they cannot sit with me in the accessible area and I cannot sit with them in their allocated seating. We are expected to sit separately thus breaking up our whānau and our collective experience.
  • Movies - accessible seating is limited in the theatre and often times able bodied patrons have taken the seats. Cinema companies assume that having an allocated space is good enough and they have 'ticked that box' by having it available.
  • Flying - when learning to use the ramp and processing passengers, train with people with a variety of disabilities and ages, instead of training with each other.  I also find it difficult to be first on, last off, as I feel this is to accommodate able bodied patrons rather than the needs of those with a disability. (I feel it’s to get us out of the way, and we wait right until the very last person to get off the plane, then we are rushed as the flight crew want to get out quickly.)

These are just a few of the things I face living in society.  I don’t complain or mind that I live in a world that is not easy for me to access independently like able bodied people but what I do mind is that some able bodied people are in positions to make decisions that affect me. For example flight attendants, when they do their training please train with people who have a variety of disabilities so it’s real. And when you are out on the job for real, you know how to do your job right, you can use the equipment correctly, giving me - the one living with a physical disability - a lovely experience.  And if people in these positions are not able to bring in real people with disabilities, then go a day without sight, without hearing or without limbs. Then you may see what we face on a daily basis, and then we might see positive change in our communities.

 

This is my access story, it is one of many. I'm sharing it because I want a law that puts accessibility at the heart of an inclusive Aotearoa New Zealand.

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