Living Is Not A Luxury

Though I am beyond angry, I am not beyond words.  Though our words are not getting through, we must persevere.

I have spina bifida and hydrocephalus.  I am also gay.  I am also a woman.  I am also a socialist.  I am also a feminist.  I am also a writer.  I am also a reader.  I am also a learner.  I am also a music lover and record collector.  I am also a dog owner.  I am also…  sick of my disabilities trumping everything else so that the first thing on this list seems to be the only thing that matters about me and relegates all else to the status of an addendum.  That’s enough of feeling sorry for myself because this is too important to let that get in the way.

Right now my disability IS the most important thing about me.  As a person with disabilities, I have something to say.  I and people like me continue to be treated like second class citizens.  Change needs to happen faster.  Change needs to happen now.  We are not going away.

I am eternally grateful to those people with and without disabilities who have worked together to bring about changes.  I am grateful for the sacrifices they have made and I am thankful that those people have made their mark and made a difference.  I refuse to feel grateful for aspects of my life that others have the luxury of taking for granted.

I will not sit here and be grateful for the changes that have come about so far that should be accepted as a minimum standard for people to live their lives well because living is not a luxury.  I will not be grateful to those who don’t speak to me like I’m an idiot.  I will not be grateful that it has been years since a stranger has tried to give me money because they felt sorry for me.  I will not be grateful for my privacy and to the people in my life who treat me with dignity and respect.  I will not be grateful that I was allowed to go to school and on to university to get a decent education.  I will not be grateful that I came second in interviews for jobs that I was more than capable and qualified to do.  I will not feel grateful to the interviewers who patted themselves on the back and who were so impressed that I had got so far in the selection process, despite my disability.  I will not be grateful that I can get into some shops and even move around with ease in a few of them.  I will not be grateful that there are public facilities available to me when I need them… sometimes.  I absolutely will not be grateful that I can take a bus without fear that I might be left behind, abused, patronised or injured.

I am relieved that I can now take public transport and enjoy the experience rather than dread it; though I am relieved only for myself.  I am sickened to the stomach that many people are still having to accept completely unacceptable conditions as I once did, so that they can live their lives.  Living is not a luxury.

A number of years ago I lived just out of the city and needed to commute most days for work, for study, to see my friends, to volunteer, to borrow books, to shop, to attend appointments… and to do all of this, I needed to catch a bus.  I needed to travel into the city by bus most days to live and living is not a luxury.

Every day I lived with the fear that I might come across a bus driver who would treat me badly.  This included: angrily and verbally resenting having to transport me on their bus; not getting out of the driver’s seat to pull out or unfold the ramp at the back or front of the bus and eyeballing me as they drove past a stop with the access sign on the bus being fully visible.  

On one occasion I had a man ask angrily which stop I was getting off at.  When he didn’t hear me properly, as I was at the back of the bus, instead of asking me to repeat myself, he drove around aimlessly gettin angrier and angrier.  With a busload of people, an unpleasant journey became potentially dangerous to passengers and scary as he started driving erratically and off route.  Another time, the driver requested that I turn my wheelchair around so that my back was facing the back entrance to the bus.  He took me up the ramp backwards.  The ramp was very steep as he had not ‘knelt’ the bus.  I fell from my chair, breaking my leg.  I kept taking buses because I had to to live my life and living is not a luxury.

I have moved back to my home town.  That I miss the city is a great understatement.  The buses here do not run after normal working hours.  It is cost prohibitive to go where I might be afforded any kind of a social life after dark.  That needs work, for sure.  That said, getting around is a much better experience.  I can take a bus without a rising feeling of anxiety every time I wait at a stop.  The drivers are courteous, relaxed and above all professional about taking me on their bus.  I am given the assistance I need to get onto the bus.  The drivers make sure there are no obstacles between me and the space allocated for a wheelchair.  They ensure I am safely where I need to be.  I am so relieved that I can take a bus now without fear or anxiety but I am not grateful, I’m angry.  I am angry that this is not happening everywhere for everyone because without quality of life you are not really living and living is not a luxury.

I know drivers are under a lot of pressure to operate within strict schedules and time constraints.  I know that drivers face verbal abuse, bad manners and ill treatment.  I’ve seen that myself and my heart goes out to them, it really does.  I know that it can be difficult to empathise and rise above prejudice when someone has never encountered or experienced disability before in their lives.  I also know that companies are working on providing appropriate and comprehensive training for their drivers.  I know that there are a great many drivers out there who make bus travel an easy, stress-free and pleasurable experience for people with disabilities.  This isn’t just the experience of people with disabilities in smaller towns.  I encountered this positive behaviour in the city as well.  Those drivers who treated me well and who acted with the utmost professional behaviour were under pressure, too.

I don’t think it takes too much imagination to appreciate just how awful things might get for a person who is not able to travel within their own town or city.  The implications are huge and are being visited upon people with disabilities right now.  Living is not a luxury, it is a basic human right.


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