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 blasé 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