Sorry is a Sometimes Word

A few years ago, I wrote a piece about apologising in relation to my illnesses, the unintentional emotional manipulation that can accompany apologies, and why often, thanking people for their support is a much more appropriate response. In the time since then, I have gotten a lot better at saying “thank you” rather than “sorry” when someone helps me … but I still apologise a lot in other circumstances.

Recently, someone told me off for this. His reasoning – if you are apologising constantly, letting it become nothing more than a habit, then it loses authenticity. He asked what I would then do if I’d really done something wrong, and needed to give a genuine apology?

Cue moment of existential crisis as I tried to work out whether apologising to someone who’s visibly annoyed at you for apologising will make the situation better or worse and vaguely considered option three – just slowly sliding under the table while humming Tracy Chapman.

Now to be fair, I had just issued about fifteen apologies in the space of a few minutes, and once I managed to stifle my automatic need to give fifteen more for the awkwardness, I could see where he was coming from. This wasn’t a perspective I had considered before, but I’ve certainly had my share of relationships and friendships in the past where the apologies were frequent, but the changes of behaviour were notably absent, until the word “sorry” started to leave a pit in my stomach.

I am genuinely feeling guilt when I’m saying I’m sorry, and there is an authentic desire to make the other person feel better, including examining and changing my own behaviour where needed. However, I’m often apologising in situations where my guilt is unwarranted, or the perceived slight exists only in my mind.

So that leaves me with two questions:

Why am I apologising so much, and is it a problem?

At the time, the reason I gave is that I’m tending to take responsibility for things which aren’t my fault, including other people’s feelings or discomfort. Illness and disability do make a lot of people uncomfortable, and I know my tendency to start stories with things like “So this one time part of my back died for no reason… it’s okay, it grew back eventually…” do not help with this. While my twisted sense of humour, and ability to find the funny side of everything, is something I love about myself, it is also something I feel the need to apologise for when I see it make people squirm.

When I stop to consider it, I think there are also a few other contributing factors here. Of course, anxiety and depression probably play a part, particularly in the instance above as I had been going through an unusually bad mental health patch at the time, after being really well on that front since I got Bindi.

I do notice that when I’m in a good place, the apologies are noticeably reduced, or at the very least, the reasons behind them are more logical. But when I’m not sleeping and therefore slipping into a darker headspace, it can start to feel like I need to apologise for my very existence, let alone anything else. The nervous energy and overthinking aspect of anxiety doesn’t help with this either, as if you think about anything for too long you can convince yourself it’s 1) a problem and 2) your fault. There can also be an element of “duck and cover” to interacting with new people when you have PTSD (or other forms of anxiety) until you figure out whether they are safe, and you can relax with them. Even mild irritation from a stranger can feel like it could be a threat, and so appeasing the person with pre-emptive apologies becomes a part of self-preservation.

Which leads into the question of whether it’s a problem.

Sociologist, Maja Jovanovic, believes that unnecessary apologies hurt us, making us smaller and weakening what we have to say. I have started to notice there is a level of self-fulfilling prophecy to this, as rather than appeasing my guilt, apologising lots makes me feel even more like there is something wrong with me that I must apologise for. I notice my body language changing when I say “I’m sorry”, shrinking in, as if I am diminished by my mistakes, illnesses and flaws – something I whole-heartedly do not believe.

What I like to call the “Labyrinth Effect” also starts to come into play. If you treat someone or something as if they are a threat, you associate them with that fear and they ultimately become more intimidating to you. In the words of David Bowie’s Jareth:

“You have cowered before me, and I was frightening.”

Breaking the Habit

All of this has made me question the effect apologies are having on my own self-esteem, the people around me, and the way I interact with both. So, I have been trying to break my apology habit, but it has led to a strange development and the discovery of one more possible reason why I apologise so much.

I decided to start small, addressing one particular form of apologies. I made a point of not apologising if someone bumped into me, or in some other way caused a disruption, instead simply accepting their apology and moving on with my day. I figured this would be an easy one to address, as I know I’m not actually at fault in these situations; I’m just apologising because… New Zealand.

But here’s where it gets interesting.

On multiple occasions, a stranger bumped into me and, when I said nothing, they came out with comments along the lines of “Oh, that’s okay, love”. I had kept my pledge to myself not to apologise, but despite this, strangers were accepting apologies I hadn’t given and didn’t owe. And not just one or two people, this happened on multiple occasions.

Now, I don’t entirely understand what’s happening here, but my best guess is that people are seeing Bindi and my dark sunglasses, assuming I’m blind and therefore deciding the accident must be my fault, despite evidence to the contrary.

I have to admit, after the first few times this happened, I did start to wonder if I was somehow causing these accidents, and you may well be wondering why so many people bump into me. I guess the truth lies somewhere in between. If someone is looking at their phone or walking backwards away from a conversation still focused on their companion, an able-bodied person may be able to quickly dodge out of the way, but it’s trickier for me when I’m sometimes a little unsteady on my feet and have a dog (and sometimes walking stick) to negotiate. But regardless of my speed, if you’re not looking, it’s not the responsibility of anyone else on the street to get out of your way, and certainly not their fault if you crash into them. In fact, in many of these instances, I was standing completely still, to the side of the pavement out of the way, when the person walked into me.

Expectation

This did make me consider the role expectation plays in excessive apologies. In these instances, it was very clear an apology was expected from me, whether or not I genuinely owed one. But I think it extends beyond this. Not to turn this into an norms vs crips argument, but I do think there is a level of expectation that disabled and chronically ill people will behave in certain ways, one of those being apologising for the impact on able-bodied people’s desire to do things in inaccessible ways.

Asking for any kind of access assistance – even if it’s a legal right – sometimes leads you to being made to feel like an inconvenience, as if your presence is only allowed by obligation, but that really you are not wanted or welcome. Apologising can appease some of this, allowing for a more friendly and less awkward environment for all. For example, you learn very quickly that the best way to ensure your food is actually gluten free when you’re coeliac is to start your order with an apology for being annoying, and end it with a self-deprecating joke. Otherwise, you risk an eye roll, a comment about pretentious hipsters, and a guessing game as to whether your food is actually safe to eat.

Even if the words “I’m sorry” don’t cross my lips, I’ve learnt to present certain pieces of information about my health with an apology in my voice. Not because I’m really ashamed of them, but because I am consciously crossing the taboo of discussing illness, mortality and admitting to weaknesses rather than just “being positive”. To not apologise in these circumstances, usually leads to questions of whether it’s really that bad if I’m not miserable, and difficulty getting access needs acknowledged or met.

In a confusing contradiction, I find I must also apologise if I DON’T want to talk about my health, as it’s seen as entirely unreasonable to have an assistance dog, mobility aid, or other visible sign of disability in public, but not be willing to satiate the curiosity of every tom, dick and harry as to why. People often ask invasive questions and then are horribly uncomfortable with the answers, yet take no responsibility for the situation, laying all of that at my feet instead. This isn’t just a disability thing, of course. This is something many of us experience, for example, with the question “when are you going to have babies” and the answer “I can’t/don’t want to/have just recently spawned a half alien half human hybrid”. Somehow it becomes the place of the answerer to apologise for the discomfort, rather than the invasive-question-asker to acknowledge they were over-stepping.

The undercurrent of all of this seems to be that warranted or not – I feel I am expected to apologise frequently, and simultaneously to feel bad about how often I apologise.

Refuting the Expectation

But this is not to let myself off the hook. Just because the world potentially expects something from me, it doesn’t mean I have to give it. The world has a lot of expectations of what disability looks like – most of them negative – and I do not meet many of them. Continuing to apologise in this way is reinforcing the belief that it’s valid to expect apologies, and while it’s currently socially acceptable to feel discomfort around disability and illness, or irritated at having to accommodate differences, that doesn’t have to be the way it will be in the future. Not apologising may be one way to allow people to acknowledge their own discomfort, examine it and maybe even address and eradicate it.

While exploring all of this has made me realise the apology habit is going to be harder than I thought to break, it’s made me more determined to do it. Whether it’s not apologising for someone bumping into me, not taking responsibility for anyone’s discomfort with my answers to invasive health or baby questions, or simply asking for gluten free food without calling myself annoying, I strongly suspect each small step will make a difference.

Thanks for reading,

Little Miss Autoimmune

Disability and Ableism

I don’t like conflict. I mean I really don’t like conflict. In the last few years I’ve developed a fun symptom where if I get really angry or upset, my blood pressure drops and I run the risk of passing out. As a result, I’m now a pretty calm person and I avoid potentially emotionally-laden conversations, especially online.

But there have been certain discussions lately that have been harder to ignore. The film Me Before You has prompted a lot of people to make comments about how they would kill themselves if they were to become disabled, in arguments defending the film.

I find it baffling that any reasonable, modern person would consider this an okay thing to say. My initial instinct was to avoid dealing with this, but when a comment of this nature was made on my facebook, I saw just how widespread and accepted these ideas are, and realised that most people don’t even understand that what they are saying is harmful. As difficult as it is for me to talk about this stuff, I can’t expect the world’s perception of disability to change if I am not willing challenge to it.

Saying that you would kill yourself if you became disabled, is not any different to saying you would kill yourself if you were gay. I understand that this may be confronting to hear, but that doesn’t make it any less true. The only difference is that one of these statements is considered socially acceptable to say, despite the hurt it causes, and one of them is rightfully condemned because of its harmful nature.

To be really clear, I am not against the idea of euthanasia (I am not necessarily for it either, but this is not what this post is about.) If you say you would kill yourself if you were to become disabled, you are not talking about euthanasia, or even talking about your own life, but instead about your perception of what a disabled life is. Whether this is your intention or not, you are effectively saying that you do not believe disabled people’s lives are worth living. Effectively saying my life is not worth living, that killing myself would be a reasonable decision.

Online, posts are read by able-bodied and disabled people alike, and in all likelihood at least one of those people is struggling to find reasons to stay alive right now. A major life change, like a new disability, will often involve a process of grief, and suicidal thoughts may be a part of that. That stage of adjustment and grief is not what life with disability is going to be like forever, but it’s hard to know that when you’re in middle of it. If someone was suicidal because of depression, personal crisis or any other reason people would give them support and list reasons to live. However somehow it’s seen as okay for people to publicly state that they would kill themselves if in that position, when it comes to disability. Depression can be feel just as debilitating as a physical disability, yet it would not be okay to say “I would just kill myself I were depressed like you”. If these types of comments were made about any other issue, they would be labelled as bullying, and removed from forums.

To come back to my earlier point, there is absolutely nothing, NOTHING, wrong with being gay. There is, however, something difficult about being gay in a world that contains homophobia.

There is also nothing inherently bad about being disabled. But there is something very difficult about being disabled in a world that is set up for, and rotates around, able-bodied people.

I’m going to say that again, because I get that for some people this will be a perspective shift that is difficult to make. There is nothing bad about being disabled, it is the world which we all create and contribute to which makes it feel that way.

There will be no choice over whether or not you become disabled in your lifetime. Illness or injury may strike, and the results of that are out of your control. It is within your control, however, to influence what type of world you would end up disabled in. People feel like they would kill themselves if they were disabled, because they live in a world where that is an okay thing to say. Where accessibility is an afterthought, where disabled people are seen as un-dateable and un-hireable. Where getting even the most basic of needs met requires fighting red tape in underfunded and broken health, welfare, and social service systems. Where, as a disabled person, the only representation you see of yourself in film is where the characters kill themselves because they don’t feel a life like yours is worth living, and where able-bodied people walk out of the cinema loudly proclaiming how lucky and grateful they are not to be like you.  

This does all add up to feeling like the world supports your right to die, more than they are willing to support your right to live.

This week 19 disabled people lost their lives, and 25 more were injured, at the hands of someone who is reported to have said he was trying to rid the world of handicapped people. I’m sure many people would like to dismiss this as the actions of someone deranged, but I’m not sure I can do that so easily. I can’t help but draw mental comparisons to the climate of ableism we live in, and the violence that stems from the climates of racism and homophobia.

Instead of saying that you would kill yourself if you became disabled, how about doing something that would make the world more liveable for disabled people? How about changing things, so that suicide doesn’t feel like the only option.

I know, it seems like an unreasonable ask. You are just one person, and you can’t possibly change things when the entire world is set up for able-bodied people. But every little change can make a difference. Even if it’s just to one person.

•    If you are setting up an event, is it possible to use an accessible venue? I often hear “but will disabled people even want to come to this?” – if you want to go to it, it’s likely someone with a disability will want to as well. If you can’t find a suitable accessible venue, ask the venue you do use what provisions can be made for people with disabilities attending. This doesn’t need to be an argument, sometimes all it takes is someone asking the question to draw attention to the issue. If you decide not to use a venue because it’s not disability-friendly, tell them that’s the reason – bringing it to their awareness gives the owners the opportunity to do something about it.

•    If you are an architect, game developer, business owner, webmaster, theatre creator – anything where you are creating something – are there ways to make your creation more accessible? If you’re not sure, is consultation with people with disabilities possible? For example, is there really any reason to make the main entrance stairs instead of a ramp, or is that just what you’re used to? If you are not in charge of making these decisions, can you challenge the person who is to think about these things? Lack of accessibility is often an oversight, rather than an intentional snub, and bringing it to the front of people’s minds can make a huge difference. I know I could probably do better on making the websites I run more accessible – this is a small thing, but it’s a change I can make.

•    Try not to get angry or defensive if someone points out that something is not accessible. I was shocked at how nasty people became when it was pointed out that Pokemon Go is not accessible. I know you all love catching Pokemon, and there are some great things about the active nature of the game, but that doesn’t change the fact that it isn’t accessible for everyone. It’s okay to enjoy things that aren’t disability-friendly. It’s not okay, however, to get defensive, chuck a tanty and spew horrifying abuse when the lack of accessibility is pointed out to you. Disabled people do not need to “just go off and die” because you think it might interfere with your fun. Accept it, help look for workarounds if you can, and keep accessibility in mind the next time you are creating something.

•    Challenge people if you hear them say derogatory things about disability. If you wouldn’t put up with racism, sexism or homophobia, don’t put up with this either.

This has been a hard post to write, and I accept that not everyone will agree with what I’m saying. Other people will have different perspectives on these issues, and that’s okay. Again, I am not making judgements about euthanasia itself here. That is a completely different issue. My hope is just that one day, disability won’t be that big of an issue, because the world will have figured out how to make it work. I know that the things I’ve suggested here won’t change the world, but they are a start.

Thanks for reading,
Little Miss Autoimmune