The World Is Not Equipped for Me

When I walk up the driveway to my mum’s unit, I bypass the front door. It is permanently locked, as no one has stepped—or rolled—through that threshold since Mum (Jeanette) moved in. Its corresponding hallway is too narrow and structurally impossible to widen without knocking through the adjoining walls.

* * *

JACK: Tell me about yourself.

JEANETTE: …Well, I like to travel when I can. I like decorating…Antiques! I don’t have many, but I have some. I like making old things new again, that’s kind of what my philosophy is.

I love music and singing. I like learning things. I like to go to the art gallery because there are a lot of historical paintings, so you get to see how people used to live, what they would wear and the implements they would use in their daily life.

I like stimulating conversation—different ideas of how the world and people came to be. The theories of Plato, Descartes, Spinoza…I wouldn’t call myself an intellectual, but I definitely like to learn. I suppose that’s it. I’m a shy person. I find it really difficult to talk in a group because I don’t feel like anybody really listens. But I’m a bit deeper than I look, I guess.

* * *

I pull out the garage door remote, one of two spares given to me and my grandfather. The grinding of the clunky gears alerts Mum to my arrival, and when I walk up the garage’s small grey ramp and through the wide sliding door, she is waiting for me with a pleased but anxious smile. Though I’m only 5′2″, I still have to bend down to hug her.

* * *

JACK: Can you describe your disability?

JEANETTE: I was born with quadriplegic cerebral palsy, which means it affects my limbs as well as my perceptual vision…And it’s a degenerative thing, so it gets worse as you get older.

* * *

Mum’s home—her unit, she would object—is one of the many compromises she has had to make due to her disability. On a noisy main road, with a modern interior that clashes with her 1940s aesthetic, the unit’s only appeal is its proximity to immediate family. Living mostly on her own for the first time, a close support network was a top priority—followed closely by $47,000 in renovations to make it accessible.

* * *

JEANETTE: The world is not equipped for me. There’s work for me everywhere I go.

I can’t speak for other people…perhaps I think too much. But you have to think when you’re disabled; you can’t just do things.

When I go out with support workers, I have to make sure the car’s the right height, because if it’s too high, I’ve got no hope in hell of getting into it.

If I want to go to a restaurant or a theatre, I have to ring up and see if it has stairs. Once I went to the Twelfth Night Theatre to see the story of Johnny Cash. But it had two flights of stairs, and I had to organize for two nice men to get on either side of my chair and lift me up every step. Or… when you go on holidays, you have to find a hotel that’s wheelchair-friendly. You have to make sure there’s bars on the toilet, that there’s a shower I can crawl into.

It’s come a long way since I was a kid in the 60s, but most of society, even in 2023, is not wheelchair-friendly.

So it’s not only people’s attitudes that affect me—although attitudes are a lot better—but it’s the constant thinking: ‘Am I gonna be able to do this? How am I gonna get around?’

I just get so weary of it.

* * *

Despite typically being one of the most important rooms in a home, Mum’s kitchen is the only room with no renovations. With poor mobility in her hands, cooking is next to impossible these days. The gas isn’t even connected. Instead, Mum opts for a diet of microwave meals, nutrient shakes, and continental soups—the latter of which cover the counter in pre-filled mugs, preserved with plastic wrap and rubber bands. Just add water.

We get delivery when I’m over.

When our burgers arrive, I grab plates from the second drawer down—where miscellaneous utensils might normally be—stored for ease of access at Mum’s lower height. I cut her burger into quarters and ask one of the numerous speakers of her smart home setup to play “Golden Brown.”

* * *

JEANETTE: Your dad and I went to Europe with a Christian organisation called Crossroads. I don’t think it exists anymore, but they used to take disabled people on holidays. One time we were in Austria and they treated us—like I understand that they’ve got rules and they’re responsible for us—but they treated us like we were intellectually impaired…things, instead of a married couple on holiday who unfortunately had to have help. It was terrible. But I kicked up a fuss. They wouldn’t let us sleep in the same bed!

JACK: What was the reason for that? Were they separating people by gender?

JEANETTE: I don’t know. But I argued, I said, “I want to sleep in the same bed, in the same room as my husband. Thank you very much.” And when they gave us forms to evaluate the trip later, I went to town!

JACK: But they did accommodate you eventually?

JEANETTE: Yeah, but again, I had to argue for it. I mean, the leader of the tour and his wife, they would’ve slept in the same bed. But not your father and I? What happens if we wanted to be intimate? They never even thought of that…

Look, I consider myself an ordinary woman who happens to have a disability. And yes, there are differences, some of them are very significant. But that? Not being able to sleep in the same bed as someone I’d been married to for seven years? That was abnormal, that was wrong. Why should I be treated differently? I’m still a person, and I’ve had a pretty able-bodied life, and I resent being stuck in friggin’ boxes—

JACK: What do you mean by an able-bodied life? You said “normal life” before, too. What do those things mean to you?

JEANETTE: A normal life to me is…we used to live in our little home, and it was just you, me, and dad. We took you to the movies, to concerts, on holidays—we did everything. I got up and prepared your father’s lunch every day for when he went to work. He dragged himself off to an ordinary job, no matter how he felt, because there’s no way in hell he wanted to be on the pension.

But the NDIS1… it’s not conducive to a normal life. You’ve got stuff that needs doing, that you can’t do yourself, but you’re strapped to somebody else’s watch. And you have to say, “Have we got time to do this? Can you do this?” And some of it’s very personal, like getting money out the bank. I’m basically having to trust strangers all the time.

Also, the way the NDIS is structured, you’ve got to have reviews and be assessed so you can keep on having it. They make you feel like a statistic, and I don’t allow it. Sometimes people come and do Workplace Health and Safety in my own home. They sit there and tick little boxes and it’s very dehumanising. They’ve got certain categories. They’ll say “You fall into this and that category” to my face, and it pisses me off. I’ve said, “People like me are not categories. We’re people.”

…Everybody expects me to put up with it. They’ll say, “You can’t do anything about it.” Yes, you can. You can limit the number of meetings you have. You can choose the length of time between your reviews—I chose three years because I hate it so much. You can limit the number of people that come into your house. You can do that when you have to. Because I can’t stand it. It’s not conducive to a normal life. So my able-bodied, normal life is gone. And in its place is clocking on/clocking off.

Even if it’s a nice thing—like next week I’m going down to Harbour Town with Susan, but I had to beg and plead for those hours. It can’t be helped. But that’s not an able-bodied life. An able-bodied life is what we used to have when you were little. I didn’t need any of this sh—nonsense.

* * *

We pause so Mum can go to the bathroom for the third time since I arrived. I can tell she’s getting frustrated with herself. This time seems more urgent, so I wordlessly take her chair and wheel her to the door. She used to protest when I did that; she doesn’t anymore.

The bathroom has the most modifications by far. There are bars on either side of the toilet and two more in the shower. A second, moveable shower hose has been added two feet off the ground, as to be accessible to someone sitting on the floor. Most noticeably, there is a perpetually damp carpet on the tiled floor so she doesn’t slip crawling in or out the shower. If there are non-slip shower mats big enough for her needs, they’re not available in non-specialty stores or websites.

* * *

JACK: Do you ever think you’re too hard on yourself or talk negatively about yourself because of your disability?

JEANETTE: No, not at all. I will make fun of it sometimes, but that’s basically to put another person at ease. People think I’m too honest; being honest about my disability upsets other people more than anything. I’ve never been one for sugar-coating. And the truth is, it does affect me. I get depressed, and I do have anxiety because of the…system. It’s on my medical file—those and lack of vitamin D. But I’m not insecure because of my disability.

I think I’m quite a nice, capable…reasonably capable person. If I talk to myself at all, it’s always to encourage myself to keep going.

* * *

As we finish the interview, I thank Mum for her time and emotional labour. She says she was happy to do it and just hopes she “gave the right answers.” I make her a coffee, and we spend the rest of the evening watching old episodes of The Honeymooners (she says she was meant for a different time; I don’t need to say that this time is hardly suited to her). I leave the garage door open for her overnight support worker when I go.

* * *

JACK: I’ve noticed you always say “person with a disability” as opposed to “disabled person.” Could you explain the difference?

JEANETTE: We’re all people first, we just happen to have a disability. I would say “a person who suffers a disability” or “who has a disability.” I’m very aware of my disability, but I’m still a person first. And I like to think that most people who know me well can see beyond my disability. I’d hope people would think, “Yes, this person might sit in a wheelchair, but let’s find out what sort of woman she is.”

However, many in society only see the physical and then make assumptions according to what they see. People have tended to treat me in a different way because of the disability, but there’s so much more to me than my physical state. But you need to look beyond labels to see that.

As people living with disabilities, we can acknowledge it. But most of us want to be seen for who we are, not what’s wrong with us, which is not our fault to begin with.

The physical thing is what you see, but it’s not who I am. Do you know what I mean? I don’t define myself by it. And neither should you. You need to recognise it, for your own sake, so that you’re aware of your limitations. But then always strive to do what you want to do and what you can do.

* * *

Later, I tear my hair out over the transcript. It’s more suited to a book-length biography than an essay, and I resent having to whittle it down to its bare bones and most provocative quotes. Not when she let the dam break and pour out, seizing the opportunity to share her experiences.

I debate mentioning her specific disability at all. I don’t think my theoretical readers have to know her exact medical diagnosis to sympathise with her struggles. I anticipate a certain level of internalised ableism in them and think “You don’t need to know how ‘lucky’ you might be in comparison. This isn’t inspiration porn. It’s about how the world is not equipped for her, how even the organisations created to assist and uplift people with disabilities can perpetuate ableism, how people see her as disabled first and a person second, how she doesn’t feel heard.” I’d hoped to rectify that a little. She deserves that much.

I get to the end of the transcript, and something icy forms in my stomach. I cut a paragraph and paste it back at the top of the document. It’s the part where Mum talks about what she likes, who she is as a person. It’s the part I want people to know first, but it was the question I asked last.

Notes

1 National Disability Insurance Scheme