Battling for My Castle

I’m not a home body, per se, but I do enjoy being home. My home is the one place where I am in my element. I know where everything is, I’m familiar with the obstacles, and nothing dangerous is likely to trip me up. A blind person’s home is often the lone setting in an ever-changing world over which they have any control. They likely don’t need a mobility aid to move around it with ease. They can feel safe, navigate efficiently, and enjoy a space that is adapted for their needs, instead of moulding to everyone else’s. In our homes, generally speaking, we are at liberty to be completely ourselves, with as much independence as possible.
It’s good to trip and run into things sometimes, to learn to orient in unpredictable environments, because the world won’t always be ideally set up in a way that’s safe and simple for blind and other disabled people. Hell, my parents were advised by someone from the Canadian national Institute for the Blind that they should routinely rearrange the furniture without warning me, just to keep me on my toes. They didn’t heed the advice, thank goodness, and only rearranged the furniture when they fancied a change. Like me, they believed it was important that disabled people have one home base where they can put those tools away and rest.
But the blind person’s home as sanctuary can only exist if housemates, partners and/or family members agree. And it can only work if the blind person in question feels they deserve such a home, or at the very least, a smaller space within their home that works well for them.
I didn’t consider this controversial. An alarming social media experience proved me wrong. As it turns out, plenty of disabled people don’t believe either of these things. They don’t think household members have any obligation to a disabled occupant and, more bewildering still, they seemed to think the very concept of being accommodated in one’s own home is unreasonable, untenable, even greedy.
Yes, many of the very people who insist coffee shops, grocery stores, schools, workplaces, and all manner of public spaces be accessible and accommodating don’t think that applies to their own families. Their own spouses. Their own parents and siblings and roommates.
How do I know this? I discovered it the hard way, by posting what I thought was an innocent question on social media, and being totally flabbergasted by the results – so much so I deleted the thread within the hour, convinced no good could come of it.
In the thread, I asked for suggestions to help my now-husband get better about keeping our home safe and blind-friendly for me. Nothing draconian. I wasn’t asking that he label every object in the house, or memorize complex organizational systems. I didn’t require him to arrange everything precisely the way I wanted, or clean to absurd levels, or, I don’t know, walk around with a blindfold so he could experience my suffering. Our shared desire was for him to learn how to be more conscious of things like open cupboard doors, pushed-out chairs and other hazards that are hard for me to anticipate and incredibly painful when bumped at a good clip.
I don’t gallop around my apartment, but I like to walk at a brisk pace, as anyone might in their own houses, without fear of stepping on an expensive tablet or sustaining mild to moderate injury. Piles of laundry on the floor? No big. Cluttered counters? Whatever, I’ll deal. Smashing into a protruding closet door or banging my hip on an open drawer? No thanks. I got so sick of toppling half-full water glasses discarded in precarious places that I began dreading the walk through my own kitchen. I wanted to stop bashing my toes and banging my head, and my partner was tired of watching me get hurt. He felt terrible, he couldn’t understand why he was finding it so hard to accommodate such a simple request, and he thought I might get some good feedback online.
Here is a paraphrased composite of what I got back. Lots of people were lovely and helpful, but those comments aren’t the ones I want to highlight today.

  • “You think it’s hard now? Try having animals and kids around.” (I have neither, so how is this relevant, exactly?)
  • “Are you sure he’s not doing this on purpose? Sounds like domestic violence to me.” (Huh?)
  • “Your expectations are way out of whack here. It’s his home too.” (Right, but I’m getting hurt. Regularly. In my own house. And he wants that to stop as much as I do, so…)
  • “This is normal. You just have to get used to it. I walk slowly and hold my hands out and stuff.” (In your own damn house? All the time? Do you use your cane as well?)
  • “You can’t micromanage a housemate and you shouldn’t try. That’s really controlling.” (But he’s my fiancé. And he wants to be better. He hits his head on his own open doors, you know. No one is having fun here.)
  • “Wow, he sounds like an idiot. Who can’t remember to close a cupboard?” (How understanding of you.)
  • “This is just the reality of blindness. You just deal. I do.” (Good for you?)

Thinly veiled judgment followed well-meaning but mystifying concern, with accusations of controlling behaviour bringing up the rear. All that, and very few good suggestions buried in the mix. I’d been prepared for people to ask why my partner was having such difficulty. I was even ready for the odd comment suggesting it was my own fault, because there ain’t no victim-blaming party like a disability victim-blaming party. I must admit, however, that I had not imagined I’d encounter such a large and diverse group of people for whom no one had ever, it seemed, made a real effort to keep their home environments safe and reasonably blind-friendly.
I’ve never lived in a perfect space myself, and I’ve had a few housemates who made no effort at all, but that didn’t stop me from aspiring to something better one day. That didn’t convince me I’d better give up altogether and shuffle along in a space designed for everyone’s comfort but mine. Did that make me especially entitled? Suddenly I wasn’t sure.
I’ve put off writing about this for something like a year, not because I didn’t have a lot to say, but because I was so confused and afraid to prod the hornet’s nest once again. I was second-guessing myself. Was this a wake-up call that I was being too demanding? Perhaps this philosophy comes from somewhere legitimate and understandable. If someone took the time to explain it to me, I might head some way toward comprehending it. Maybe all this cynicism stems from too many demoralizing conversations with kids and spouses and parents and siblings who just didn’t get it, who wouldn’t or couldn’t make changes, who didn’t see the point. It could well be I am unusually privileged to live with a partner who wants me to be as comfortable in my own house as he is, even if it means making a few adjustments.
But I don’t think I will ever agree that strangers owe me more than those with whom I share my home. I won’t claim to know what these commenters were thinking, but from where I’m standing, it looked like they’d persuaded themselves that it’s better to call someone controlling and unrealistic than to admit they might deserve more – that more might be possible if they ask for what they need, and do the work to make it happen.
Maybe this perspective isn’t strange to anyone else. Maybe I’m in the minority. But I stand by this: If you think your workplace and your local library and your school and your dentist’s office and your government should accommodate your access needs, but you don’t think this also applies at home, that’s a damn shame. The notion that your boss, your professor, your elected representatives are more obligated to you as a disabled person than your own family is inexpressibly upsetting to me. The very thought that you feel more comfortable advocating for your rights as a citizen or employee or voter than as a spouse or a housemate is heartbreaking. The idea that you’d belittle a fellow disabled person for wanting an accessible home, the same way you want accessible public spaces, makes me sad and angry and deeply frustrated.
So, okay, I’ll concede that practice is useful. Expect the unexpected, and all. I should hone my instinct for caution. I should be ready for anything when I’m out and about. But I have the rest of the world to test me that way–at work, at other people’s houses, out on the street. I don’t need or want that at home. When I come back from a long day of working around other people’s idea of well-designed spaces, after a day of dodging distracted texters and avoiding people’s pushed-out chairs, the last thing I want to do is more of the same. I want to sit back, relax, and know that when I get up for another cup of tea, I’m not going to need a cane or hands-out-shuffle-walk to get there safely.
My home is my castle. It is organized in a way that works for me, without unduly inconveniencing the one who shares it (he has since learned to close doors, and I can’t remember the last time I got hurt around here). My home is my one safe place, my retreat when navigating a world that isn’t designed for me becomes too much. I intend to keep it that way, and for that, I will not apologize.

6 thoughts on “Battling for My Castle

  1. Hi Meagan
    It strikes me that the type of individual responding as you paraphrased is not the type to be demanding their rights outside the home either and, though they do everything from ignoring to heaping scorn upon those who do, are quite prepared to benefit from the results of their labours. I have a friend who is on record as naming such people parasites – an epithet I think most appropriate. . Last time I checked, one’s home is supposed to be one’s refuge.
    I myself have all but given up on getting my family to obey such minor considerations as putting common objects back where they found them or properly closing containers so that they will not spill their contents upon next use by me.
    I have also known people with physical impairments who relate stories of their parents, so obsessed with treating their disabled offspring in the same way as their non-disabled siblings, risking actual injury to said offspring by insisting that, for instance, they balance precariously and dangerously on a kitchen stool so they can reach the sink in order to take their turn at the cooking. Would those commentors whom you describe really have blamed themselves if they had been injured? Probably.
    This leads me to the regretful conclusion that those who would tear you limb from limb for wishing a safe and equitable home environment are either stupid, parasites or masochists.
    Next time you have a query like this, consult those whom you trust for advice and leave these others to their pitiful existence.

    • Hi there, Kylee. Thanks for reading!
      I appreciate the general sentiment expressed here, but I would prefer commenters refrain from calling people stupid or pitiful, and it is not acceptable to call people parasites on this blog, so I do ask that you avoid that in future. I like for my blog to be a welcoming place, including its discussion section, and I think you made your point well without resorting to that. I know and respect several of the people who were involved in that thread. I simply disagree with their way of seeing things and don’t pretend to understand why they feel as they do. Some comments were more disturbing than others, but I would not use such language to describe anyone, least of all near-strangers on a forum, whose personal circumstances remain a mystery to us both.
      All of that being said, I agree that in future, should I need advice like this, I won’t be throwing it out there to the general masses again. That was not a useful exercise, and I won’t be repeating it. And, yes, I am familiar with those parents who are so obsessed with the letter of equality that they entirely lose the spirit of it. It’s incredibly damaging and I’ve never figured out a constructive way to tackle such a belief.

      • For the most part, I don’t have many visitors here in my home. (i’m talking pre coronavirus) by the way but those who come into my home mostly are my support workers and they mostly know where to put things or I put things where I had them. Or if something was going to be put somewhere different to where i’d put it I would be told where it was going to be put. It’s not a blindness thing to leave doors half open or chairs left out and it’s not only blind people who have come a cropper from knocking into them. In defence of Kylee who left the first comment on your blog although i’m not condoning her language whatsoever but I will say this much. I’ll be the first to admit that if i’m so pashonate about something and if there are things I myself have observed or had to deal with and it’s made me angry we’ve all wanted to blow our top as a result of something we’ve experienced and when we’re so keyed up and angry we’re not exactly thinking straight and we certainly aren’t rational. and Meagan, you could easily take a swipe at me for what I’ve just said but I have some semblance of a point the comments I saw that you got in the since deleted thread some of it was absolutely hidious and people who made those comments sure as hell wouldn’t get away with making them to your face I can tell you there is far too much ableism and ignorance in society at large. we’re told to just suck it up and ignore it but it ain’t always possible.

  2. I applaud you. Your home is YOUR castle (and your hubby’s, of course), and it is no one else’s business what you do, or don’t do. (This goes for life as well.) My castle is not perfect — there are shoes everywhere in the entryway, and random glasses on every available edge of furniture, a cause of much frustration and cursing. And that’s not going to change. But don’t move the furniture, please. Broken toes are no fun. Carrie

  3. Hi. You’re post both resonated and horrified. I know I shouldn’t be, but I’m shocked at the responses you received. And also really saddened for all of the folks who have internalized that getting hurt in your own home and expecting the only one to modify their behavior is them is just par for the course. And that it’s so black and white, forgetting that relationships are a learning process of a meeting of both peoples needs and wants. As a kid and young adult, my parents had the approach that they weren’t going to modify the house for me and every time I got hurt, i was told it was my own fault. As a result I swore my own home would be set up so I didn’t have to work so hard to be safe and comfortable in it. Then when I met and married the person who is now my spouse, we went through a period of him learning and of course my learning, and like your partner he had his mental blocks but he too wanted a home where I felt as safe to move through it as he did. Over time we figured out a combo of environmental management and conscious changes in both of our behavior, and the house is a place where we can both relax and be ourselves. I still occasionally walk into door frames, but that’s on me, not him. Lol. I’m kind of stymied that folks would willingly engage in a relationship where that wasn’t the understanding and expectation. I’m glad that you and your partner have found solutions.

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