In may, I visited my very first escape room. I expected some hiccups, but was nonetheless excited. Escape rooms sounded like the ideal amalgamation of everything I find fun: low-key activities, free of unnecessary stimuli, packed with puzzles and bolstered by a team atmosphere. I’m not naive, and I anticipated visual challenges I’d be unable to meet, but I assumed there would be enough tasks I could manage to make the experience worthwhile. Besides, I was used to settling for a little less. It’s an art form at this point.
The escape room proved less accessible than I could have imagined. We didn’t make it through the entire sequence, so I can’t guarantee there weren’t accessible brain-teasers lurking near the end, but everything we encountered was, at minimum, partially visual. Even the logic puzzles required such complexity of description—and such perfect recall on my part—that I gave up completely. While the fully-sighted participants swarmed the claustrophobic space, ransacking shelves and deciphering tiny writing on the walls, I hung back, at loose ends. Occasionally, some sympathetic soul would try to include me, but the activity was on a tight timeline, and none of us could think of a timely and effective way to let me participate at all, let alone as fully as everyone else. Ultimately, I was of no more use to anyone than the toddlers running around our legs.
I left the room disappointed, berating myself for being so. Shouldn’t I have expected this? Shouldn’t I be used to this by now? Why did I let myself hope, anyway? I ought to know better.
When you grow up rural and disabled, disconnected from opportunities and understanding peers, you’re likely to adopt the art of settling as a survival mechanism, and quickly. If you’re unable to be at peace with missing out, you’re probably in for a war of attrition.
It wasn’t all bad: My family and friends were unfailingly accommodating, and my sister was denied many an activity because my parents worried it would exclude me. Cousins and friends modified games to make them easier for me to play, and valued my participation almost without exception or complaint.
The rest of the world wasn’t so inclusive, and I came to accept, at a very young age, that I’d better get used to the sidelines. After a few years of skipping rope on the stage while my gym class played dodgeball, or solving math equations while my classmates took swimming lessons, I even grew to prefer the fringes. It seemed safer there—more suited to my introverted, self-conscious personality. Inclusion seemed like an unreasonable burden to place on anyone, and when you grow up surrounded by nondisabled people, you tend to prioritize harmony over desire.
By the time I started university and amassed a group of disabled friends, I noticed how demanding—that’s how I viewed them then—they all seemed to be. They wanted described video and tactile museum exhibits and blind-friendly versions of mainstream sports. Their determination to participate felt foreign and frightening. I’d spent years convincing myself I was happy to spectate. A deeply-embedded combination of habit and self-protection had let me hover on the sidelines without acknowledging my own desire for a life more fully lived. All this time, I had thought myself the kind of person who hangs back, sits things out, and says no to anything that seems too fun or messy or adventuresome. With the exception of my musical performances, I’d rarely permitted myself to reach beyond my limits and ask for more. On the cusp of adulthood, I was forced to accept that I had contorted myself into the settling kind to avoid rejection and exclusion. It’s easier to say “I don’t want to be included,” than to say “I wanted, and did not get.”
Growing pains set in, and some of them persist today. I still catch myself being a “no” girl. Settling for less than everyone else comes far too naturally, even now, and I continue to demand higher things for others while quieting my own dangerous longings. Loved and encouraged as I am by my family and friends, I still instinctively reassure myself that I don’t need inclusion. I don’t need to be welcomed. I don’t need to transcend my most basic needs. If I can pay my bills and hold certain types of jobs, what right have I to anything more frivolous?
Growing pains are not eternal, and look how much growing I’ve done! I’m now more focused on inclusion than access. I’m more inclined to ask for a pleasant experience, rather than contenting myself with a bearable one. If my reaction to the escape room is any indication, I’m becoming downright spoiled, expecting to enjoy social gatherings and play an active role in activities I’ve paid for. I’ve practically become a princess!
I’ve come a long way, but I won’t diminish what it took to get me here. Dismantling my tendency to settle has been a painful and unpredictable process, with many discouraging moments when I’ve judged myself or others for wanting what nondisabled people are given by default. Occupying my place at the table has been, and remains, an ongoing work-in-progress.
Are you a settler? Have you learned to think of inclusion in terms of what you deserve, while believing it’s a right for everyone else? Is fun something you force yourself to earn? Do you pretend you like the margins because the centre might reject you?
Don’t settle to survive. Do not place yourself in a supporting role because main characters have bodies and brains that pass as “normal.” Break the pattern of treating less like it’s more. Be grateful, and be patient, but be a little demanding, too. Realize that a more vibrant life is possible, and allow yourself to want it, because no one else can make it happen for you.
Most nondisabled people don’t tie themselves in knots, wondering whether they deserve to enjoy their lives. So, my fellow disabled people, why should we?
Where's Your Dog? 
there seems to be a bit to unpack here but this brings to mind one question for me. why do I spend a lot of my time alone? maybe because getting out and about or meeting new people comes with risk and my parents are often very protective of their only child. but then again, when it came to physical education from grades4-6 in primary school, I was never excluded it was suggested that I didn’t participate particularly if there was contact sport involved simply because I had had a kidney transplant and any contact sport might have put me at risk of being bumped which I felt was safer for me to go for a walk to buy the local paper on a Friday afternoon then call into the butcher’s shop nextdoor. I do go out as I am in my local lions club but as for friends in my age bracket I’ve got to decide who I would consider friendship material the fact that the friend I really hung out with and chatted to regularly is gone that’s certainly no excuse for me to keep looking around for friends but now I feel I have to take a bit more care when it comes to committing to a friendship. either I’m going overboard about how cautious I need to be about friendship commitment or my reasoning is justified. fear of rejection has always been a bugbear of mine over the years and shaking that is easier saidthan done. I’d be more than happy to get out moree but I wish my parents could shake the felings of beingng protetive just a little. maybe that’s why I’ve somehow settled for just going out whenever I’m with my parents or lions club members or when I have pre-planned reasons to go out.
something I have probably spoken about in previous comments on other posts that could possibly fit here is not feeling that I could settle around a table with others and often prefer to sit alone whether that is totally off topic or it fits somewhere
You’re right: there’s a lot to unpack here. It sounds as though you spend a lot of time alone at least partially because that’s what you prefer. I’m a dedicated introvert, so I understand that sometimes I avoid social contact because it might involve risk, but often I avoid it simply because I find it overstimulating and exhausting. I wonder whether introversion isn’t playing a bigger role in your social habits than you realize.
I’ve been doing a fair bit of reflection since I wrote that comment on this post before the pandemic hit. I wasn’t nearly as angry as I have become since the pandemic and my father has had to call the hell of a lot of it. He doesn’t deserve that. As a child I never wanted much to do with anybody and spend a lot of my time alone but now I’m paying a very heavy price for that. I’m starting to reach the point now where I’m getting a bit sick and tired of being by myself. And the reason I think I’ve become so angry lately has been because of social interaction was seen as illegal during pandemic times. It’s certainly no excuse, but it doesn’t help. And the fact that I’m starting to read through previous comments that I’ve left in that have been responded to in some of the older posts. The fact I’m starting to reflect a bit more since leaving the comments having overprotective parents hasn’t helped, but I’m trying to see where the things might change this year it’s probably going to be a very slow process but I hope things get better.
it’s not that I prefer to spend a lot of time alone I like company of others and I like my own company but in small doses I actually wonder if fear might be playing a small role or whether that’s just a laim excuse.
So I’ve not commented directly before but Meagan you know my thoughts on this point well enough.
Like you, I grew up in a place where inclusion was an afterthought beyond the bubble of family, and have experienced very similar things to you – doing verbs in the library instead of swimming was a fairly common occurrence for me.
But when you say “don’t settle”, I am concerned that sometimes, that will be interpreted as, complain bitterly and externalise, taking no responsibility for your own inclusion. I know that that’s not what you said. But demanding inclusion must be done in the right way – finding your own solutions, solving your own problems, to the extent you can, before asking for assistance quietly, then loudly if necessary. I know that the non-disabled world can be clueless and intransigent at times, but let’s not lose sight of the fact that we have to meet people halfway at least. Don’t settle, sure, but that process must be, at the very least, as much an internal process as an external one.
I am writing this without the benefit of coffee or good sleep, so apologies for any rambling.
Your concerns are valid, and I do agree with you, at least to some extent. However, most of what you’re saying here is well beyond the scope of what this post was meant to achieve. Trying to shoehorn messaging about how exactly you should go about securing a more inclusive lifestyle would have made it too long and too complicated. I did tell people to be patient and grateful, and also told them no one else can make it happen for them. That was my way of saying that you have to take a reasonable, courteous, and proactive approach to your inclusion if you want it to be successful. That said, this post was mainly meant to help people want to be included in the first place. Before you can take an active and responsible role in your own inclusion, you have to believe you deserve it. You have to want to live a full life, and then you can worry about how to go about it, and how loud to be. I’ve tried to place this kind of messaging in posts before, only to have it get completely buried, or confuse people about what the article was ultimately trying to say. This post was not meant to judge anyone, or tell them how to approach their own lives. It’s just there to say, hey: the fringes are fine if you honestly like them, but if you secretly want more, that’s OK.
Great post! When I first met my now spouse he would ask me often what I wanted. And I’d be flummoxed on how to respond, what I actually wanted in any given situation had for so long been not even a consideration I’d stopped letting myself think about it at all. Over the past 5+ years I’ve gotten better about considering what I want in situations and going about adding that in to decisions. It’s been an interesting shift, a struggle still at times, but overall brought a lot of good into my life.
I’m proud that you’ve begun considering your own wants, and that you have a partner who facilitates that. Keep doing what you’re doing!
I very much know what you mean: I’m also someone who prioritizes “harmony over desire”, as you put it. Whenever I have to ask for accommodations I tend to be apologetic and polite and I hate that. I know, deep down, that I have every right to take up space and demand fair treatment, but somehow it’s been inculcated in me by ableism, I guess. Lately, I’ve been trying to be more vocal and demanding, and reading stuff like this helps me affirm what I know and, you know, have the resolve to stand up for myself. I loved your clear-eyed & determined take here. It’s a great rallying cry.
Thanks for reading! The wonderful thing about life is that if being polite and gentle comes most naturally, we can lead with that, and only get more demanding if necessary. If being straightforward and direct comes most naturally, we can lead with that right away. There are so many ways to approach this, and as someone who is more comfortable with the kind, quiet method, I’m very glad of it. Whatever your favoured approach might be, I wish you luck and courage.
I guess what has been slightly overlooked here or that’s what I think anyway, we need to have the overall confidence to be able to stand up for ourselves “confidence” being the keyword here although it ight have been implied just by the content some of us just don’t feel we have the confidence to stand uip for what we want and fear of rejection is just a part of it. again, am I making sense? or am I going off track completely as I have a tendency of doiong sometimes?