Monthly Archives: November 2013

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.


Confronting an Absence

I visited another orthopaedic surgeon a couple of days ago to discuss the possibility of a double leg amputation. I know now that this is a confronting sentence with which to begin a blogpost. This is not an instinctual assumption for me, I’m going by the reactions I’ve had so far to the idea. I look at that sentence quite differently to a lot of people. To me it equates to a discussion with a professional about a potential solution to an ongoing problem. To some it is a frightening, unthinkable concept and for others it is an idea that begs to be challenged.

Of the limited number of people I have spoken to, txt or tweeted with about leg amputation thus far, only a couple of people have been able to discuss the issue with me rationally without shock, judgement or pity. I want to state very firmly and emphatically that I am not in turn judging these people. I just didn’t expect the reactions I have been receiving. I don’t know what I was expecting. Perhaps that was naive of me.

It was especially unfair to expose people who I have not had the pleasure of meeting to such a confronting notion without any real context or explanation. I don’t usually do regret but I certainly wish that I hadn’t used Twitter as my first real disclosure on the subject.

As I was writing that last sentence I realised in real time that I hadn’t even told my parents or any other family let alone friends that I had the appointment booked until after I’d seen the surgeon. Strange then that I should turn to Twitter. Writing a tweet is often like writing a succinct diary entry for me. I sometimes forget that there are real people who read the random thoughts that pop into my head. That’s the best explanation I can come up with for tweeting something so personal and so confronting. I was nervous too and I was looking for comfort.

Twitter is a wonderful tool for many reasons and I have ‘met’ some truly awesome people through the social network. I realise now though, having tweeted so bluntly: ‘I have an appointment with an orthopaedic surgeon to discuss amputation of my legs. Just another normal Wednesday morning’, that this was not the way to go about sharing this information with anybody or to seek support. I don’t know what I was expecting or even what I wanted in response. I hadn’t really thought it through.

Don’t get me wrong, people have been lovely. I can’t really talk to anyone properly about this though without a lengthy explanation of my situation, so I shouldn’t have tweeted about something so complex in such a cavalier way with the expectation that people would understand.

I’m already getting a bit sick of having to justify to people that I am even considering amputation as an option. That’s my fault. I shouldn’t have brought it up with people who don’t really know me or my situation. Therein lies the problem.

As a trade off for unburdening myself and sharing what I’m going through, I feel like I have to justify my own medical decisions to people who don’t know my history to help them understand. I must also bear the burden of their reaction on top of trying to make a pragmatic decision with the best professional advice I can access.

The principle issue with sharing so much of myself with people who don’t properly know me and certainly don’t know me ‘in real life’, is that complex, three dimensional issues, when reduced to a single tweet, will almost always attract simple, two dimensional responses. The medium is the message, as McLuhan so astutely stated. The inability to really process the idea of amputation as a real option has not been exclusive to Twitter though, so this analysis is only part of the explanation of why people have reacted in such a way.

The gulf between my lived experience and the every day lives of able bodied people is immense. The gulf becomes even wider when an issue such as amputation is raised. There are so many reasons as to why amputation is a completely different consideration for me than for an able bodied person. It is a hard thing for me to consider but almost certainly not in the same way as it might be for somebody else.

My legs are attached to me and so are a part of me; that much is obvious. They have absolutely no function beyond aesthetics though. I cannot move them and I have no sensation below the knee. After years of infections, wounds, ulcers and burns, that aesthetic function is limited to how I look in jeans. I haven’t been able to wear shoes for years, so even a sartorial consideration has limited value.

The mere fact that my legs are a part of the whole of my body is, if I go ahead with the amputations, going to be difficult to get my head around. Like it or not, our bodies do feature large in our sense of self. Our identity is not exclusively defined by our physical embodiment – if it were, social networking wouldn’t really be a thing – but our bodies are extremely important in the formation of our own personal identity. That goes for people with disabilities, too. It will take a shift in my thinking to accept my body the way it is after amputation if that’s what I decide to do. I will adjust though, just as most people do when changes to their bodies occur.

The surgeon I visited saw no reason why I shouldn’t have a double leg amputation if that’s what I want. He certainly believed the advantages would far outweigh any negative considerations. I am waiting on a second opinion after which I will go back to the surgeon I saw a couple of days ago. Knowing our health system I’m going to have plenty of time to think on it.

A Bit Of Perspective

As a quick follow up to my last post (Hold On To Yourself) I wanted to let readers know I’m doing much better. I’m still not feeling %100, or the nearest approximation to it that I am able to achieve these days, but my midline is out and I am back home for rest and recuperation. I’m on the right track.

I have been genuinely moved by the concern expressed and support given by people who are close to me and also from people who I have never met in the flesh – what an age we live in! I can’t be more grateful to you.

I find myself able to reflect properly on everything and I am once again just so grateful to be here on this ‘pale blue dot’.

Very soon, however long we live, you and I will both be dead and gone. We will live on in the memories of others for a while but that will be a soberingly short afterlife. It’s good to get some perspective on that once in a while so that we can be active in getting the most from our lives. For me that means being aware of what I have and what I am capable of.

This is not one of those ‘made for TV’ moments. I’m not trying to inspire you or encourage you to achieve anything. Getting the most out of life means different things to different people. That’s what makes your life so awesome. You can do with your life what you like. You can ascribe meaning, or not, in whatever way you choose. It’s your life to live. We all have moments though that remind us of why it’s so great to be alive and we need those moments.

We are here for such a short time. What you do with that time is no concern of mine as long as you are doing no harm to anybody. What I do with the time I have left is frankly none of your business. All I’ll say is, to the seeker of meaning, it starts with being aware of what you have and knowing how bloody lucky you are. Right now I’m still here and that makes me as lucky as you are. Being alive is an amazing experience in and of itself. However much we try to analyse, interpret and understand it, it’s beyond words. That doesn’t stop us trying though to use each and every method of expression we can to explain it.  That we will never truly know all of the answers makes the experience all the greater.