Mad as Hell

I should stand up for myself
“It’s so nice to see people like you out.”
I should make more complaints
“It’s really lovely that you can do normal things.”
I should go somewhere else
“I just wanted to tell you, you are so inspiring.”
Like it’s not something that happens to me every time I leave my house
“I met this guy who was like you and I started helping him with his groceries and he was really horrible about it.”
People are only trying to help
“Hey, sweetie. Do you need help? Are you ok, darling? Dear? Hun? Mate? Dude? Buddy?”
They haven’t had good experiences with others like me
“Oh, watch out! Here comes trouble.”
They were angry, too
“What happened to your leg?”
They blame me for the anger of others
“Do you know…? They are like you.”

Some dude whose name I’ve forgotten now

I’d like to get on with my day
Why can’t you walk?
My life
Why can’t you walk?
I don’t want to be angry
Why can’t you walk?
I am not an angry person
Why can’t you walk?
Being angry takes a lot of energy
Why can’t you walk?
Being angry makes me tired
“Why can’t you walk?”
And yet, here I am


Around and About

I decided pretty early on that I shouldn’t drive. Those who know me well believe this to be a very good decision. I think we all sleep better with the knowledge that I will never be behind the wheel of a car. I haven’t been tested for suitability to drive. That would be the first step if I were to decide I wanted to give it a go. I just don’t even want to risk it. As a teenager, I had a ‘could’ve been worse’ and certainly bad enough jet ski accident that left me with torn ligaments and tendons throughout my body as well as massive bruising. It took ages to recover. I collided with another jet ski. Naturally, there was a whole lot more room to move on the river than there ever would be on a road.

Slow reaction times, poor fine motor skills, a total inability to visualise where I am in relation to everywhere else at any given time, not being able to concentrate well on more than one thing at a time, all of these things, added to a total lack of confidence in myself, make me not having a license to drive a sensible decision in my book.

*sigh* Why am I justifying me not driving to you? I shouldn’t have to. I guess I’ve got used to having to explain to people, since I was a teenager, why I’ve decided not to drive. Well meaning people get very frustrated with me. They put it all down to a lack of confidence and something that I’d be able to do just fine if I put my mind to it. Well, maybe. I’m just not willing to take that risk. It’s not that I wouldn’t love to drive. The independence that driving would afford me would be life changing. That said, I am happy knowing that I have made the right decision for me.

If I want to get around, I have a few options. My preference is to wheel to wherever I’m going. Of course this is restricted somewhat by time and the effort it takes to push my wheelchair and it was much easier when I lived in a compact city. I’m fit and strong, so I can travel a reasonable distance, given enough time. I’ve even wheeled myself 28km in a charity ‘walk’. For that kind of distance though, I prefer to take a bus than spend all day getting to my destination only to end up a shattered wreck.

Buses have come a long way. In my lifetime, most if not all of the buses I might want to catch have been made wheelchair accessible. Last weekend, I caught a bus from Wellington Airport into the city and back again to the airport, when I was ready to leave. Everyone on the bus seemed utterly miserable except for the drivers, both of whom were very calm and professional. Luggage and smaller bags were everywhere. People heaved their oversized bags onto the large luggage racks at the front of the bus as they clambered on.

When still more passengers ambled onto the bus, struggling with their bags, they started carrying them to their seats and holding onto them in the isles. For someone who has difficulty with spatial tasks at times, I’m quite good at knowing what will fit into a space and how to stack things to use space efficiently. I wished at that time that I’d had a clipboard and a hi vis jacket. Then I would have felt bestowed with sufficient authority to instruct everyone on how to stack their bags so that the minor skirmishes over space didn’t have to occur. I watched it all with bemusement and, holding onto the vertical grip pole next to me, I smiled at my ability to get from the plane, onto a bus and into the city on my own. It can be so liberating going away on a trip that involves public transport.

I got a plane to Wellington, which is the best option I have over long distances. Buses are ok for a couple of hours but I can’t be guaranteed that longer journeys will incorporate rest stops long enough for me to find and use an accessible bathroom, nor can the provision of a wheelchair accessible bathroom be assured.

I’ve always adored flying. Not just being in the air, though that is the most fun part. I also love airports. Checking in, with my wheelchair and bags, if I have them, tagged and ready to stow, I’ll find my way to an eatery with exorbitantly inflated prices and food on a scale from terrible to fine. I’ll usually seek out a bathroom, which I know will be accessible. I might buy a book and a couple of doughnuts – one for now, one for later – then I’ll find my ‘gate’, let staff know I’m there and wait. I enjoy hanging out in institutional buildings with processes and procedures and rules and regulations, it makes me feel safe. I like doing all of this on my own. Public transport gives me a sense of independence that I don’t always feel when I’m relying on people I know to get me from A to B; people who I haven’t paid to provide me with the same service as everyone else.

I only had to take one taxi while I was in Wellington. That was a relief. Even more of a relief was the fact that my driver was just the nicest person. We chatted away and he commented on how easy it was to get my wheelchair in and out of his car. I prefer to order cabs rather than vans. I like getting out of my wheelchair into a car seat. It’s much more comfortable for me and it’s really not difficult. I know how well a taxi ride is going to go from how a driver reacts to having to fold down my chair and put it into their boot or the back seat of their car, depending on the size and shape of the car. Some, as in this instance, will express surprise at how light my wheelchair is and how easy it is to fold and take apart. Others will act like I’ve ruined their day with the difficulty of what they are faced with. This can, in turn, ruin my day.

Though I prefer to take public transport than get rides with people I know, the exception would be taxis. If I have to choose, I prefer in that case to ride with friends or family. I was a bit concerned that the taxi ride back to the hostel I was staying at might not be so pleasant. I’d been very lucky with my ride there but that was unusual, so I was very happy to accept a lift back with friends.

I was only away from home for a night but it was a really packed 24 hours for me, much of which was taken up with travel. I have some real public transport horror stories. It absolutely made my weekend that getting around was made so easy and so enjoyable. It has put me in a really good mood and it meant that I was able to enjoy every aspect of my trip. People take getting around for granted, I think. While it has taken far too long and there is still work to do, I am so grateful that there are now so many options in public transport that are now accessible to me. How well people who work in public transport are able to cope with me using their service can affect not just how I experience using a particular mode of transport but how well I enjoy an entire trip, from beginning to end.


Disability and International Women’s Day

I cannot begin to think about International Women’s Day, or indeed the experience of being a woman, without first acknowledging the role that disability plays in my life. I am a woman with a disability, a disabled woman.

Both identities have been difficult for me to embrace and even to accept at different times in my life. I never felt like I fitted in with other kids who had disabilities. They all seemed so at one with who they were. I felt like I had to fight against being disabled because of what I thought having a disability meant. It was a negative thing to me. I had been through a lot of painful surgeries, many of which were traumatic. I also had feedback from adults who would try to give me money on the street, as a way to lessen my burden, I suppose. Or they’d tell me how sorry they felt for me. I didn’t see that having a disability was in any way a positive thing.

Being a girl and a woman has never been easy for me either. I have been what in contemporary vernacular is referred to as ‘gender non-conforming’ since I was a child and I knew I was a lesbian before I became a teenager. Before I had any control over what I wore or how I might present myself, I would fantasise about getting my hair cut off into a neat buzzcut and wearing well tailored suits. Of course, in my fantasy, I was standing. A strong, tall and confident man in a business suit working with equally important people. If I were a handsome, besuited, white, able-bodied, heterosexual man, I could be important and successful.

Integrating my disability and being a woman into my identity and sense of self has been a hard fought and ultimately rewarding experience. I happily identify now as a woman with a disability, though neither way of identifying myself has ceased to be unproblematic.

Being a woman with a disability meant always wondering just how much harder I was going to have to try, to reach the level of my peers. It meant watching those same peers get ahead on an upward trajectory that I fell off over a decade ago. It has meant realising after I had tried and tried and tried, that I was never going to be able to work hard enough or be good enough anyway. I have to recalibrate my self worth and my definition of success all the damn time. Eventually I realised on my own that none of this is my fault. All the cards were stacked against me.

The most insidious message women with disabilities are taught from a young age is that we have to be better than everyone else to succeed. This is a not too subtle reframing that places the responsibility on us as women with disabilities for the problems that society has in accepting us for who we are. I have very nearly died on several occasions because I thought if I just tried hard enough, I’d ‘get there’. I just had to stop trying to succeed on society’s terms in the end because it really was going to kill me. I mean that quite literally. Something has had to change in order for me to stay alive and since society wasn’t going to in a big hurry, I’ve had to.

I applied for so many jobs when I graduated and in the years following. Many of these were jobs in the disability sector. Not only was I well qualified for the positions but I also had what I know to be valuable insight into what it actually means to live with a disability and the skills to apply that experience to the work I might have been asked to do, if I’d only been given a chance.

I’ve been on the other end of a phone call from a woman who wanted to give me a job in the intersecting disability and education sectors. She had to explain to me that the two men on a panel of three had decided to award the job to a young able-bodied white man who personified exactly the person I had fantasised myself as being when I was a child. She offered congratulations and implied that it was progress that I had got so far. That was the first full-time job I ever applied for, back when my health was not a mitigating factor in my ability to work. I sometimes wonder if I’d had a job back then, whether my health might be better now. It’s not worth pondering for too long. I had several other job interviews in my 20s for similar positions. I came second in all of them. I changed my strategy, I lowered my expectations, I embarked on further study. Nothing worked. Then my health started to fail. My turn was over and I wouldn’t get another one, I couldn’t play anymore.

Having tried over many years to find work and having worked in a number of part-time and voluntary positions, I set my sights this year on a teacher aide job. I’ve had some schools say they will get back to me if something comes up. I really hope they do. I do wonder how many schools I’ve sent my CV to have since given jobs to able bodied people that could have been very capably done by me. I can never know this of course. Discrimination is much more tricksy these days than it every was. People have learnt that it is not ok to discriminate, so they are much more clever about it. Now we all know it’s happening but it is done behind closed doors and out of earshot of anyone who might be able to corroborate our stories and experiences.

Being a woman with a disability is exhausting.

How great would it be to have more women with disabilities working with youth, mentoring them, making it known that we can help each other? I say women here because in my youth, I remember very few women who were put forward as role models and mentors for young girls and boys with disabilities. If we saw anybody at all with disabilities as public figures, they tended to be young disabled men who had the same focus on physical fitness and sporting prowess as the able-bodied men who were offered up as our most valued role models and representatives of national pride. I don’t believe much has changed.

I want to live in a world where a young girl with a disability can realistically aspire to be a successful woman with a disability, on her own terms. Being a woman with a disability means loving myself for who I am and not what society wants me to be but will never let me be.


Bad Things

We are conditioned from early on to accept that bad things happen and that’s horrible but eventually the bad thing will go away or get better and an equilibrium, a return to normal, will be established.

Occasionally that won’t happen. Sometimes the bad thing is here to stay and it’s awful and it will continue to be awful. This is difficult for so many reasons. I often liken it to falling down a bottomless well. You will continue to fall but eventually you will stop screaming and you’ll kind of get used to it. It can take a very long time to adjust. That’s ok, though. It’s not going away. You have time. You should allow yourself time. This is not a moment to take advice from people who might suggest the ‘pulling up of bootstraps’ or other such well meaning ‘tough love’ nonsense.

Eventually you will carry on and the bad thing will become a smaller and smaller part of your life and it will be ok. That will happen. If you have given yourself what you would consider a good long time and you are still really struggling to accept your new normal, you might seek professional help. Talking to your doctor or other health/mental health professional could be a good start. I have done this myself, with varying results. When you find someone who meets your needs, it can be life changing.

Fortunately we are very good at adapting to new normals. Sometimes people who don’t understand what is going on for you might suggest that you seem to be doing so much better or they are glad the bad thing is not there anymore. That is sometimes more acutely frustrating than living with the bad thing.

Once it has been established that the bad thing is not going away, a certain amount of self preservation and acceptance kicks in and it can appear from an outsider’s perspective that everything is now fine. Sometimes it’s worth explaining that the bad thing is still there but it’s not going to go away, so you’re learning to live with it. It could be that the best thing you can do is change the subject and remember that for those who are not living with bad things, it can be difficult to impossible for them to understand your experience.

People, for the most part, don’t know what to say when a bad thing is a permanent fixture in your life. That’s ok because really, if you’re honest with yourself, you can’t think of a damn thing that anyone might say that will make it any better either. There are rare people with what seem at the time like magical powers who do know what to say and it will make you feel heard and it will make you feel like you can do this, you can live with the bad thing and be ok. I wish everybody had at least one of these people in their lives. Others cannot be blamed for not having this ability. It is very special indeed and should be valued and cherished.

Everyone has bad things happen to them. Everyone will eventually have bad things occur that are life changing. The impact and severity of those bad things will vary but the experience is universal. It’s awful but it can also be ok with time.

A good life, by your own subjective standards, can still be lived, even if the bad thing is here to stay. It will almost certainly take some reframing and you will have to work at it. You might have to ask for help and you must allow yourself time to grieve. There are no shortcuts. The good news is that bad things, even those that won’t go away, do not have to ruin your life. You are stronger than you think.


#DisabledAndCute

The tweets that are retweeted into my timeline are mostly either Trump related or are aggressively cute images to counteract the Trump effect. As I was scrolling through the emotional rollercoaster that is now Twitter, terrified at the implications of a man clueless to the intricacies of the balances of power in the US – he may be the world’s first accidental autocrat – I smiled. I couldn’t help it. The grinning face of Keah Brown (@Keah_Maria), creator of #DisabledAndCute, is just so gosh darned cute.

In mainstream media, the representation of people with disabilities has been overwhelmingly white, male and straight. The first thing I noticed about #DisabledAndCute is that it is so diverse. There is a vast range of people with disabilities represented, including people with disabilities who are not readily recognisable as such from an image. Intersectionality has also been at the forefront of representation in this project from the beginning. I don’t remember the last time I saw a hashtag representing a group with such a wide range of intersecting identities, from race and gender, to sexuality and body shape. The visuals are all stunning and each one tells a story completely different and yet with an underlying shared narrative; we are all cute, whatever that means to each of us. We all have a right to see ourselves as cute, regardless of how others might perceive us.

There has been some criticism, as I figured there would be, from people who believe the hashtag to be infantilising and patronising. Worse still, there are those who believe #DisabledAndCute to be a form of what is known as ‘inspiration porn’, which is where able bodied people view people with disabilities, particularly through images and often with inspiring text attached, as inspiration for their own lives. A typical example is something like: “The only disability is a bad attitude,” which is often accompanied by an image of a person who very obviously has a disability, in a triumphant pose, preferably at the top of a hill or mountain.

It depends on how it’s framed. If you view #DisabledAndCute as a project aimed at able bodied people, with a didactic focus, then the word ‘cute’ might take on quite a different meaning. But Keah Brown created the hashtag as a means of celebration, to acknowledge that her self esteem could be and is connected to feeling good about how she looks, despite the messages she and others with disabilities might receive from the world. It is a refreshing counter narrative to a media still downright hostile to the idea that people with disabilities can look great and celebrate how they look.

A robust dialogue on the issue of representation, from within the disability community, is important. There is also a propensity to shut down certain narratives before they have a chance to develop nuance and complexity. We need diverse narratives and voices to share wide ranging experiences of disability. We don’t all think the same. If an idea is overwhelmingly positive for a lot of people who have disabilities and there are some who don’t like it, they have every right to say so, though sometimes it might be better to say, “It’s not for me,” and move on.

When I went to post my own pics to #DisabledAndCute, quite soon after it was created, I first posted an image of my face, cropped. I am no stranger to posting selfies to Twitter. I must admit I don’t need a hashtag to boost my own self esteem. As I thought more about the importance of visibility and everything that might mean, I decided to post another couple of wider shots that included my wheelchair and amputated leg. Those in the know would be able to tell from my short stature that I live with spina bifida. As a bit of a media studies nerd, I was fascinated by the idea that with #DsabledAndCute we get to decide how to frame ourselves. We decide what’s cute. We decide how much of ourselves to include in the frame.

Since I started following and engaging with #DisabledAndCute, I’ve been thinking much more about the space that social media allows us to tell our own stories and shape our own narratives. That ‘space’ is problematic and complicated because there is always a tension between us and our motivations and desires and the demand from able bodied people that we educate them on every aspect of our lives. Since I saw the very first #DisabledAndCute image, from Keah Brown herself, it has felt like this is for ‘us’ – people with disabilities. Naturally, a lot of people who don’t have disabilities have viewed and will continue to seek out or stumble upon the hashtag. If they learn something or their perceptions and preconceived notions are altered, that’s wonderful. #DisabledAndCute centres people with disabilities, with everyone else made spectator. We control the narrative.


My Brain and Me

If I was not in my wheelchair when I was a very young child, I would sometimes launch myself off whatever I was sitting on and end up in a heap on the ground. I used to think if I concentrated hard enough I might be able to stand up. I guess I didn’t really understand why I couldn’t walk and I did think that I might just be slower than the other kids to pick it up. That was well before I went to primary school. I did understand quite well though what spina bifida meant. I would even explain to anyone who would ask, “What’s wrong with you?” that spina bifida meant I had a break in my spine because it didn’t develop properly before I was born and that my spinal cord was ‘broken’ at the same place and that’s why I couldn’t walk.

Any understanding of hydrocephalus came much later. My best guess is that the brain and its functionality is a much more complex thing to explain to a child, so it was deemed too difficult for me to understand. I also think my parents were learning in real time how hydrocephalus would shape my day to day life. I learned from very young to cover and compensate for the effects of hydrocephalus in ways that probably weren’t very evident or obvious to others at the time.

I don’t think I really understood what it meant to have hydrocephalus until I was in my mid-teens and had access to the internet. That’s when I began to do my own research. Hydrocephalus occurs in the majority of people who have myelomenigocele, which is the most severe form of spina bifida, and is what I was born with. Basically, hydrocephalus is excess cerebrospinal fluid that will not drain from around the brain unless it gets help from a valve attached to a long tube that drains fluid, often into the stomach. This is called a shunt. I had one placed when I was a baby and not only did it save from further damage to cognitive function (I was extremely lucky to have a shunt placed very early) but it also saved my life. Untreated, hydrocephalus can be fatal and, in my case, certainly would have been.

When I was around age 11, a teacher aide started joining my classes at school. I had no idea who this woman was. I knew what a teacher aide was. I’d had them before, but never in class. She was introduced to me but her role did not become clear until later, and then I had to figure it out for myself. She was there to help with anything I might need assistance with. I think it must have been established that I was doing fine in class by myself, so later I started having regular sessions on my own with my teacher aide, which mainly focused on getting me ahead in my core lessons in case I had to spend a lot of time away from school through surgery or other medical interruptions. People with spina bifida and hydrocephalus are often not very good at maths, so that is a subject we concentrated on. We tend to be a lot better at things like reading, creative writing and spelling, so I never had any help with those classes. I do remember I had to do odd things like, when the class was outside for sport or P.E., I stayed inside where my teacher aide taught me how to knit. Not only did I not understand why I was being taught something I really hated and saw no point in, I didn’t even understand that there was something different about my brain that such an activity might benefit.

Hydrocephalus can affect cognitive function in all sorts of fascinating ways. I’ve learnt to view my brain not as deformed or dysfunctional but as different and interesting. That said, there are certain things that are frustrating. It turns out the reason I was being taught, spectacularly unsuccessfully, to knit is because people with hydrocephalus often have trouble with coordination, particularly fine motor skills. This means we can find it difficult to perform more intricate tasks with our hands. My writing is not great because I don’t have the ability to control finer movements in my hands very well. It’s not as bad as it might be, perhaps because so much time was spent trying to improve dexterity and coordination when I was younger. It can be frustrating still when I’m handwriting a letter, which I tend not to do now, and I would have dearly loved to be able to draw a lot better than I can. Still, I think most people have something they would like to be good at but just aren’t and never will be.

Memory and concentration, in particular short term and visual memory, can be affected by hydrocephalus. Organisational skills can also be a challenge to acquire. I can sometimes find it difficult to follow a train of thought in a conversation because I lose track of what has been said. If I concentrate and don’t have any distractions, I don’t think it’s very noticeable. More annoying is the inability to do things like cross busy roads that don’t have a pedestrian crossing without help. I find it difficult to judge how far away cars are and how fast they are travelling, so I often try to wait until the road is clear, which just isn’t going to happen on a busy road.

I have to be taught a few times when I go to someone’s house where the bathroom is because I’m not able to keep a ‘visual map’ of my environment in my head. That was probably one of the most frustrating and embarrassing things about going to university. Not only could I not get around Wellington on my own for a long time without getting lost, I couldn’t even find my lecture and tutorial classes again, having already been to those rooms before.

Disability Support Services had small foldable maps of the university, which were not only helpful in marking access points like lifts and ramps, etc. but they also served as a discreet reminder of how to get to my classes. I was lucky a good friend was enrolled in most of my classes in my first semester, so that cut back on any embarrassment I might’ve felt at getting lost all the time. I do eventually remember how to get around my physical environment. It just takes my brain longer to store that information than it does for most others.

Something I only learned when I went to university is that I have a very good audial memory so lectures were a brilliant way for me to learn and retain information. I never really had to take notes for lectures or tutorials and I didn’t really have to study very much for tests or exams. My organisational memory is terrible, so I would have to be meticulous about writing down when an exam was and where it was and sometimes even make sure I had directions to the exam room. Then I would have to make certain I’d know where to access this information at a later date. It helps if I keep everything like that in one place – thank goodness now for cellphones! If I did forget I had a test or exam, as long as it was at the regular lecture time and place, I could be quite confident I’d still get a good mark even if I hadn’t studied. It never ceases to amaze me how weird my brain is.

I think it can help if people know some of the ways that hydrocephalus affects me so that they might modify their behaviour or at least have some understanding as to what my specific needs might be. It’s difficult to know sometimes, even for me, what is caused by hydrocephalus and what is just a facet of my personality, and I’m reluctant to overstate the impact hydrocephalus has on my life because I don’t want people to treat me differently than they might if they didn’t know I had it. Over many years of learning to adapt, I’ve been able to minimise the impact of hydrocephalus on my day to day life. On the other hand, people don’t know I have hydrocephalus unless I tell them and they won’t understand how certain things are a challenge or that I process information differently. Most often what is needed more than anything else is patience, both from myself and others.


Legless

Tomorrow I’m seeing the orthopaedic surgeon who amputated my right leg in October 2014. I saw him once after I was discharged but this is the first time I’ll see him now that I’m properly ‘healed’. 

It took a while to come to terms with my decision to amputate and longer still to accept it once it was done and there was no turning back. I think I was in shock for a considerable time and it took a lot longer than I anticipated to recover, physically and psychologically.

Now that I have recovered for the most part, I have fully integrated my “stump” into my body image, which has always been quite healthy considering I have spina bifida. I can look in the mirror without thinking about what I looked like before. I no longer try and put a sock on a leg that isn’t there and it’s been a long time since I’ve grabbed at thin air, which happened daily for ages. That was pretty upsetting. Actually, I cried like a baby the first time that happened.

To begin with, I didn’t want to go outside or to see people because I was overcome with the idea that people might stare. That was such a foreign feeling. It was so difficult for me to comprehend, even at the time, that I might feel so self conscious. After all, I have always used a wheelchair to get around and people have always stared. 

Eventually, I did start going outside more and people did stare, as they always had. It’s just that now I was noticing. I felt so exposed and raw in those first few months back home. Even that passed. I’ve gone back to not paying so much attention to people’s lingering gazes. 

The whole process has been really a surprise from start to finish. I was amazed at how many different extremely strong pain killers I needed to be on considering I didn’t expect to feel anything much but feel it I did. When the drugs started to wear off and I was due for more, I felt like death. Pain management has come such a long way though compared to 20 years previous, the time of my last major orthopaedic (spinal) surgeries. For that I am eternally grateful. 

So, with all of that behind me, I’ll be discussing with my surgeon the unfortunate fact that I’ve started having problems with the other leg now. I’m not sure that I’m ready yet for round two but at least if I have to make the same decision again I know now what to expect.