it’s not just a step

A little while ago, various people in my facebook feed shared a link to a blog post called “It’s not just a step.” I related strongly to the post because I am constantly working to deal with hurdles that Stephanie encounters that other people write off as “just this” or “just that” yet at the same time I was feeling shocked and sad about how much worse it could be. Also wondering: have I ever been the cause of one of these unnecessary hurdles for a person who already has a lot to deal with? I like to think that I am in-tune and considerate, but I also know that I’m not perfect and can’t anticipate everything.

Actually, I have a problem sometimes with whether knowing if it’s appropriate to offer someone help. I don’t like to assume that I should just automatically intervene if I see someone with a walking stick or wheelchair or walker who is attempting to do something and clearly having difficulty. They might not want help. They may be glad of the struggle because it lets them know they have achieved something. OR, they could be struggling and just fucking wishing that SOMEONE around them would be a decent human being and throw them a fricking bone. Of course, I’m not going to do the logical thing and ask, because that would mean talking to a stranger and, well, everyone has their weaknesses.

But that’s not what I was going to write today. Inspired by the Rusty Hoe, I wanted to share some of the “just a step” situations that I’ve come across since this adventure started, because I truly believe that people just do not realise that a rare and inconsequential encounter for them – the fully-able person – is neither rare nor inconsequential from the other side of the coin.

So it’s a million things, a billion things, things that you have to consider when your legs don’t work like they used to before. Before Stephanie had the walker, she used crutches, but they weren’t ideal because it made it very difficult for her to carry her bag and stuff too and of course they inevitably made her armpits and arms and back hurt as well. So I came up with the idea of getting the wheely walker thing. She was very resistant at first. Because she’s not old. Because people would laugh at her. It’s not just able people who can hold unfair perceptions of what is and isn’t an appropriate use for a particular device. Anyway. She grudgingly agreed to give it a try, and I found one on gumtree that was a bargain and we got it.

I think that one of the big motivating factors in her agreeing to try it was TATINOF. Almost from the moment they announced the tour dates for Australia, which I think was in June, I had been planning and thinking and figuring out the best way to make it happen. We knew crutches would be incredibly awkward, not to mention she didn’t have great stamina with them. A person from QPAC ended up working with me and giving me lots of information to ensure that the whole show and meet-and-greet experience would go as smoothly as possible and be as not-difficult as possible given the limitations of a person who can’t walk very far or fast, can’t have her legs come into contact with anything and has a walking device. Seeing Stephanie on the day that I took her, Brie and Lizzie to see TATINOF was amazing, but also so heartbreaking. She was so happy, energetic and excitable, chatting and laughing and being silly with her friends. She was Stephanie. And seeing her like that was a glaring reminder of how much she has become dulled by the pain experience, by the struggles, by the constant fight to be considered on an equal basis with everyone else around her. I knew that she had changed, but it happened gradually and I don’t think I realised just how much until I saw this glimpse of the old, loud, vibrant and present Stephanie that the TATINOF show bought out. So I think I love Dan and Phil almost as much as she does now, because they were able to give that back to her if even just for a short while.

The success of using the walker there gave her more confidence to use it for school. And it’s made a huge difference. Where before she could barely attend because it was simply impossible for her to carry all of her belongings while using the crutches to keep herself stable, she now had something that helped her but did not just transfer the fatigue to a different part of her body and it also came with a built in basket which solved the problem of her books and stuff.

But it bought problems of it’s own. Suddenly every classroom that has steps to enter it, or a lip in the door way, or doors that close automatically became a new challenge to figure out. Dicks who questioned the need for her to use the crutches (because the only valid reason, ever, for using crutches is a break or sprain) instead switched to asking if they can have a ride on the walker, or calling her a Grandma. When she started using the walker, we talked with the school and some of her classes were moved to different classrooms to make them more accessible for her. Her form class (roll check) in the mornings was not moved though, and the solution for that “so it’s easier for Stephanie” was to have her not be required to attend form class and instead sign in at the office each morning. And in some ways, it is easier for her. But other times it’s a real pain because they like to hand out information and notices and other stuff in form class. While she has access to notices in the office which are there for late starters, there are other things that she does miss out on, for example her school photos. It is just given that they are handed out in form class, and so she had to seek out the teacher in order to get hers.

So, the walker, it wasn’t just a solution that fixed a problem. It fixed immediate problems for Stephanie but we’ve encountered and no doubt will continue to encounter more situations where people just fail to consider how things are difficult for a person who isn’t ambulating typically. Sometimes, even when you anticipate the problem and seek to take action before it happens, people just don’t. Earlier in the year the students of Stephanie’s grade participated in a First Aid course. Some of her friends, being in earlier classes than her, talked about it and mentioned how it was held in a demountable classroom (they typically have a number of stairs leading to the door) and how they had to kneel on the floor for it. So she made sure to seek out her teacher and say, “Hey, I know this is coming up for our class, and these things are going to be a problem for me but it could be fixed by changing the classroom and asking if it would be alright for me to use the dummy on a table rather than the floor. Can you please look into that?” So the teacher agreed but of course when the day arrived and everyone else went in to do the First Aid lessons, Stephanie was told to go to the library instead.

This one wasn’t just an inconvenience. This was an outright exclusion because they could not be bothered to take a few simple steps to remedy the issues. We had words with the Deputy Principal about this who was very apologetic and assured us that Stephanie would be able to do the First Aid course still, since there were still some classes who had not had their turn. But guess what? She never got to do it. It’s something she is interested in, would have enjoyed and is directly relevant to her hopes for further education and careers, but it was too hard for them to take a couple of minutes to plan ahead so she wouldn’t be left out and sent to the library like a naughty kid on detention.

We are not unreasonable people and we understand that there are things that she’s going to be unable to do because of this shitshow that is chronic pain. But there’s one point, the ideal world, if you will (short of that one where you could just not be in pain) where whenever events or activities out of the norm occur, the person in charge makes the effort to approach Stephanie and say, “This is what’s involved. What here is going to be a problem for you and what can I reasonably adjust to make it easier?” And then they do it. There’s a huge, gigantic, gaping space between that place and the one that is the actual reality.

In this one, sometimes when Stephanie wants to participate in an activity, other people decide for her that it’s going to be too hard for her to do and that she shouldn’t attend for her own well-being. (It was a Leadership Skills day. Of course everyone knows that all leadership skills involve a lot of intense physical activity.) And then, later in the year when she presents to submit her application for a leadership position, tell her she isn’t really eligible to apply since she didn’t attend the Skills Day.

It’s also the incongruity of one week, having to demand that your daughter not be excluded from a list of students who have earned a particular privilege and then the next week receiving a letter inviting you to attend the school’s Award Night where your highly achieving child will get an award. While from the school’s end of things the first incident may take just a minute to fix and be a simple mistake, when you are on the receiving end of such “oversights” and must constantly seek people out to remind them that you’re here and as worthy of consideration as anyone else, it’s fucking tiresome.

It’s the hours of discussions and reflections that both Stephanie and I did regarding an overnight excursion that her biology class recently took. It was a field trip to examine a particular environment, which happened to be beachy/dunes/hilly/rocky. Definitely not something where she could use the walker. While she has been taking steps to decrease her need to rely on the walker, it’s a slow process and we ultimately decided that the combined effect of the travel, the overnight in a different location without someone familiar with her situation, the prospect of trying to move around in an uneven environment while trying to make observations and take notes was just not something that is within her ability at the moment and presented more of a risk that she’d harm herself further. We talked about this a lot. We tried to think up lots of scenarios and considered how they would affect her. In the past students that haven’t gone, for whatever reason, have still been able to complete the overall project by getting a copy of the data collected from a friend who did go. After our deliberations, Stephanie told her teacher the conclusion we came to and yet the teacher still pressured her to attend the trip, saying things like “you won’t get any special consideration or allowances for your project if you don’t attend” and “you really should reconsider coming, it’s a very valuable trip to go on.” Well, first, she didn’t ask for any special consideration. And second, by suggesting that Stephanie could “reconsider” and change her mind and go anyway, the teacher is basically implying that all of the factors that we carefully and thoroughly weighed up are irrelevant and inconsequential and that it was a choice made for convenience rather than one made after measured consideration.

It’s the people who see her moving slowly and deliberately with the help of her walker and then step right in front of her at the last moment, or those who make no effort to adjust their own trajectory so that she doesn’t have to change hers. I know that someone with a walker or a wheelchair or even a pram has no more “right” to have someone give way to them than any other person, but what about fucking manners? Respect? If you can do something easily that it’s obvious will take considerably more effort for someone else.. you should do it. You know, be a human fucking being. Don’t act insulted and aggrieved because she politely asked you to move your chair a bit for her to get past.

It’s the people that you see casually observing their surroundings and the people around them. Their eyes slide over Stephanie and then a second later, they slide back. What is this young person doing with a walker? Aren’t disabilities meant to be limited to the old and infirm? Had better carefully examine her to try to figure out this mystery. Subtlety? What’s that?

It is sitting in your school assembly and listening to your school’s principal tell the student body that if they do not make enough effort to be active and keep themselves fit, one day they may find that their bodies betray them and they could be forced to use a wheelchair or a wheely walker. Because, without exception, every person who uses one of these devices uses it only because they did not do enough to keep themselves a well-oiled, perfectly functioning machine. So if that happens to you, you’ll have only yourself to blame. (Side note: this one was so fucking blatant that even Abigail came home that day and expressed shock and outrage that she would make these statements. While we are able to exclude the other two kids from many aspects of this whole business, in order that they can just be themselves and be kids, even she could immediately identify that speaking like that was fallacious and insulting.)

It’s having people say things like “I wish I got a special parking spot” or “I wish I didn’t have to go to Swimming Carnival” without really considering what the price you have paid to receive those accommodations is. Don’t they think that if it was as simple as a choice between being allowed to use a dedicated parking space or not being in pain all the time and having the freedom to move about as whim dictated, most people would happily give up their access to disabled parking?

It’s about hoping that a new test will show something, anything that a doctor can look at and recognise and identify as a known condition with a treatment that has a good chance of a positive outcome. And being disappointed when yet again the answer is no. It’s when people ask what is wrong with you/your daughter and you think that finally, here is someone willing to make an effort to understand. But as soon as you say “the doctors don’t really know” an invisible curtain drops across their face. So absolute is the trust of health-fortunate people in the medical profession that they assume that if the doctors can’t find a proper explanation for your symptoms, the reason must be because you’re a big fucking hypochondriac.

It’s having to be the asshole when your daughter doesn’t want to go to school because she can’t stand the idea of yet another teacher bitching or nagging at her because of something related to her condition. It’s having to agree that no, it isn’t fair, but also having to remind her that they don’t lose anything if she chooses not to put herself in their firing line – she does. It’s having to say, some mornings, that you know she is hurting but she needs to try anyway. It’s having to listen to the disdain and scepticism in an office lady’s voice when she rings you up to ask you to come and pick up your daughter because she has “sore legs.” It’s going, sometimes, to pick your daughter up from school early because someone did something without thinking which resulted in a ball or a chair or a desk being pushed into her legs, and she’s in so much pain she she literally cannot stand, and you have to lift her into an upright position and support her all the way out to the car while biting your tongue and digging your nails into your palm as hard as you can so you have something to focus on to stop you from losing control and breaking into ugly crying in public.

It’s pointing out when people are behaving insensitively and getting a blasĂ© non-response that minimises and invalidates the point you were trying to make and makes you wonder if there is any compassion or caring left in the world at all.

it’s not just a step

misconceptions

A little while ago a few different people shared a link to this article on Facebook. It is quite a long article and well worth reading, but to summarise – for her whole life, the author had been taught and conditioned to believe that every illness has a cause and people who live eating a balanced diet, getting enough exercise, avoiding drugs and alcohol and other toxins, who are in touch with their emotions and have no inner conflicts have no reason to ever fear becoming ill because it is only people who don’t bother to take all of the steps to give themselves the best chance at health who end up getting sick. When her daughter was born and was not the picture perfect “healthy newborn” that everyone desires, she was absolutely unprepared to deal with all of the emotions and thoughts that come with learning that your child has and will continue to have health challenges. She thought she’d done all the right things, so it never occurred to her that she could have a less than “super human” baby. When she did, everything she believed was turned upside down and it took a long time for her to work through all the doubt, questioning, and confusion that came with this new reality.

Here’s one of the best things she has to say:

If you buy into a false narrative that the body is controllable, that illness can always be prevented, then by proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person’s disability is their fault.

It’s so simple but so fucking profound. You can see evidence of this everywhere. How many depressed or anxious people have been told to “just snap out of it?” And because they are not following this advice, clearly they must want to be unwell, and if you’re choosing to live like that when it’s so simple to just snap out of it, you don’t deserve for healthy people to waste their energy on feeling compassion for you.

It’s not just mental illness, though. Diabetics – who have to be so careful about what they eat, who often struggle with weight despite their carefully planned meals and exercise, who can also be affected with side effects that affect their vision, nervous system, heart or kidneys. But there’s a persistent (incorrect) stereotype in society that people with diabetes have diabetes because they ate too much sugary food. (Example maths problem: John has 30 chocolate bars and eats 28. What does he have now? Sarcastic, uninformed answer: John has diabetes.) But because everyone knows it’s unhealthy to eat too much of certain types of food, it’s their own fault and they made their bed and now they need to lay in it and not expect everyone to feel sorry for them. [Edit: came across this very thing a day or two later.]

So reading that article really resonated with me. Because further to the idea that if you’re sick or disabled, it’s your fault – is the idea that if sickness, weakness, pain or disability is a permanent thing for you then you should have learned to “deal with it” and should not burden the rest of the world with your complaints. Sympathy or compassion for illness is a limited time offer. Expecting consideration from other people past your “compassion expiry date” means you are seeking attention, wanting special treatment, milking it for all it’s worth. Other kids at Stephanie’s school have said things like “I wish I didn’t have to do P.E.” I have heard people say to those that have a Disability Parking Permit, “Oh, it must be nice to get to park at the front all the time.” These small accommodations are held against you as advantages you get that other people don’t – with no consideration for what you have to deal with every day that has qualified you for the so-called “special treatment” in the first place. It is seemingly too much for people to stop and think – hey, yeah, it must be nice to have parking spots close by.. but I bet that if she could choose she’d take having to walk 100m further at the shops than being in pain all the time.

Also, having established that any illness or disability is the fault of the person dealing with it, and logically followed that through to conclude that they are undeserving of any compassion because of it, another conclusion that people seem to arrive at is that any unusual needs a person might have because of said illness or disability are unimportant – or at the very least, less important than the needs of people who are not afflicted. When I was in high school and had my brace, I found that in some of the classrooms at school it was extremely awkward and uncomfortable to sit in the chairs and work at the desks they were paired with. I solved this problem for myself by simply choosing to kneel on the floor instead, because it put me in a much better position to comfortably see both my work on my desk and what was going on at the front of the room. One teacher, though, would not have it. You’re meant to sit in a chair and that’s that. Explaining why I was on the floor had no effect. Pointing out that I was not causing any disruption to anyone else was not relevant. The chairs are there for you to sit it and you will sit in it. (Side note: I really wish I could go back and slap that bitch in the fucking face.) Stephanie was recently excluded from several classes where the students were given the opportunity to learn and be awarded a first aid (CPR) certificate because no one could be bothered to arrange to have the class moved to a room that she could access with her walker – despite her asking the teacher in advance because she’d been made aware of the issue by some of her friends who had already had that class. Look at the story of a girl who spent most of her high school years battling TWO different types of cancer. She hasn’t quite completed all of the necessary requirements because of the toll it takes both physically, mentally and the time needed for the treatments it takes to try to not die. It seems obvious that she’s been making extreme effort to keep up as best she can, even around all of the other stuff. There is clearly a plan in place for the outstanding work to be completed in a not-unreasonable time frame. But the school district refuses to let her participate in the graduation ceremony because making exceptions “diminishes the accomplishments of the graduates.” It might be called a graduation ceremony but it’s about more than just the actual graduating. It’s a rite of passage that marks the end of your standard schooling. And.. accomplishments of the graduates? Did any of them accomplish their schooling while TRYING NOT TO DIE? She is literally being punished for having an illness that prevented her from making school her only focus. Because as students we are told – if you do not knuckle down and have a singular, tunnel-vision like focus on your education, you will end up with no prospects and your existence will become a burden on society.

And society – or at least many of the politicians in charge – have decided that they have had enough. Why should healthy people have to support your selfish choices to be less than perfect? For they will never encounter an unexpected illness, they will never have an accident that leaves them paralysed, they will never be victim to circumstance that leaves their health, housing or education unstable or unassured. And if they did happen to have one of these unanticipated events occur, well, they were smart enough and motivated enough to be rich enough to handle it.

It’s not just your health (or lack thereof) that is your fault. I’ve come to realise by the comments that politicians, wealth privileged or health privileged make that any situation in your life where you are not “winning” is your fault and there is always a simple solution. Many, many Australians these days despair that they will never be able to afford to own their own home. There are lots of factors contributing to this situation but it seems the primary one is that costs for homes (and other things) have risen much more rapidly than incomes, and people simply can’t keep up. The thing that they are doing wrong, though, is that they are neglecting to get a “good job that pays good money.” Clearly, there are lots of these good positions languishing about, unfilled, because people are faffing about, stupidly working themselves to the bone in half-rate jobs that don’t pay the kind of money you need to buy a home. This statement is not just a one-off, though. Nearly two years later, a different minister is claiming the exact same thing: “[…] enabling young people to get highly paid jobs, which is the first step to buying a house.” The implication in all of these assertions is that if you can’t afford to buy a house, it’s because you’re choosing to not work in the big bucks, highly paid jobs. Of which there are obviously plenty.

It’s a worldwide issue. An American politician claimed this week that being poor is “a state of mind,” due to people having a “defeatist attitude.” I don’t think that having a defeatist attitude necessarily has to mean that you have given up and are not trying. People are having a defeatist attitude because they have been trying, working, striving, stretching for years, and watching others around them do the same and they are still failing to manage to achieve the goals that we are being told are easily attainable if you just work hard enough. If you just want it enough. But most of them are still trying, despite mounting evidence that it will never get them anywhere near where they want to be. At an event at the girl’s school this week, the principal was addressing the students and telling them that hard work was the key to making their goals and dreams a reality. That the most successful people are the ones that work the hardest. This is setting them up for disappointment. I’m not at all saying that hard work isn’t important, but there are myriad other circumstances and variables that factor into whether you will be successful – and most of them, you can’t control. This understanding has been around for ages. It’s not what you know but who you know. If you are not fortunate enough to be already present in social and business circles where you will be exposed to opportunities, sometimes it doesn’t matter how highly skilled or hard-working you are.

These linked topics underline part of what really scares me for the future. Stephanie’s, especially. As long as we remain unable to find an answer to what is causing her constant pain, we have to accept the premise that it is also unlikely to be possible to find an effective treatment. And that means that she will be facing all of this with a disadvantage due to the disability this condition confers upon her. While it may be law that it’s illegal to discriminate against people due to disability, I think most people would acknowledge that it still happens, probably due to the prevalence of the aforementioned perception that everything has a cause and a cure and if you’re not cured, it’s because you’re choosing not to be by not trying hard enough. Disability support in Australia is near impossible to access these days. One of the things you must do in order to qualify for a disability support pension is prove that your condition has no chance of improvement within the next two years, you have to show that you’ve received appropriate specialist care to stabilise you as best as possible. When your condition is undiagnosed because no one knows what’s causing it, it’s impossible to get the appropriate care and impossible to know if or when it might ever get any better or worse. So the mere fact of being a zebra basically means that you can’t qualify for help. The most frustrating thing is that Stephanie does not want to have a disability. She wants to go to university. She wants to not be in pain. She used to want to be a veterinarian, but I think now she is leaning more towards a human-focused health care role. As she is right now, she will struggle to just navigate around a university campus and find the endurance to attend all the classes and complete all the work. There’s practically no chance that she would be able to have a part time job to help support herself on top of that, which means she will be forced to remain reliant on us. And of course we’re never going to abandon her but that isn’t fair either. Gaining a measure of independence is an important rite of passage as one attains adulthood. I want desperately for her dreams to remain within her reach, but it’s hard to keep believing that they will when so many things are stacked against her. Not rich, not healthy, not male, not straight, red-haired. At least she’s white. Pasty white AF.

misconceptions