I’m writing this with fireworks exploding in the background. My neighbors like extended holiday celebrations. It’s been going on for days–just like the two weeks of fireworks around Christmas time. I suppose they’re celebrating independence. I am not feeling so much like celebrating independence right now.
National Issues of Personal Independence
Sure, there are all the big things everyone has been talking about. We’ve talked about them here, too. About the overturning of Roe v Wade and the threats to so many other things.
I suppose we haven’t talked about all of it. We haven’t discussed the Supreme Court’s EPA ruling. But I’m neither a climate change expert nor a constitutional law scholar, and so my understanding of that is rudimentary at best. I do know that it has the potential to impact the health of the environment I live in in dangerous ways, and I can’t help thinking back to when I learned about the tragedy at Love Canal and how that changed both the public and political understanding of environmental activism and led to the creation of the EPA’s Superfund program. And I can’t help but imagine that this new environmental news will lead to even more demands for programs like that.
Independence on a grand scale is complicated. How do we balance between national, state, local, and individual authority when this country is such a vast and diverse place? Different people, different environments… just different. There are some things that should be universal, obviously, like human rights, and others that need to be left to local experts–highway regulations, for example. But that’s what the balance of independence and collective good is about. Recognizing both of those needs.
Personal Independence on a Personal Scale
I wasn’t going to write about independence for today. But then something happened and I found that I couldn’t get independence off my mind. My independence. And the things I’ve lost over the last few years. I often avoid thinking about those things. I’m not sure I’ve ever made a comprehensive list of them. I’m pretty sure this won’t be a comprehensive list either.
But as I’ve processed some of my feelings about the transformation in my life from able bodied to disabled, I’ve shared here. And it’s helped me to see things more clearly. Perhaps it’s also helped some of you. Maybe you’ve learned something about living with disabilities or about sharing grief. Or maybe you’re feeling more validated in your disabled experiences. For me, writing about disability has been part of the process of grieving. And I have a lot of that left to do.
What I’ve shared isn’t always pretty pictures. I hate inspiration porn. But I also often hide, downplay, or just don’t talk about, some of the yuckier parts. It was one of those grosser things that got me thinking about independence today though. I had to vomit.
Little Things I Can’t Do Independently Anymore
I’m not sure why. Maybe something I ate. Maybe a little indigestion. Occasionally my medication makes me feel sick to my stomach if I haven’t eaten close enough to when I take it. As I’m sitting there realizing that I need to vomit I also realize that there is no way I’m going to make it to the bathroom and be able to vomit into the toilet. You know. That thing I learned to do as a child. Something I was thrilled when my own children learned to do. But here I am, fully adult, with plenty of vomiting experience, especially after one pregnancy which had never-ending (albeit mild) morning sickness.
I scrambled for a nearby container to contain the contents of my stomach when they were ejected. Cleaned up. Oh, and proceeded to burst into tears. It seems like such a simple thing, to go into the bathroom for something like that. But I no longer have the speed to do it while maneuvering my walker. (My home is not entirely wheelchair accessible–my bathrooms don’t accommodate the wheelchair, which is another topic, perhaps, for another essay.) Thankfully, I am able to clean up on my own. At least if I’m careful and didn’t miss whatever receptacle I was using. And if I don’t do something like sick up on the bed and need to change the sheets.
The Bed Sheet
The bed sheet. That’s another thing. I can no longer manage to change bed sheets on my own. I can’t lift the mattress to tuck things in. Can’t stretch the corners of a fitted sheet at the same time. And if the bed sheets pop off or slip too much I have to wait for help to fix that. Getting tangled in the sheets is one thing when it’s in a fun sort of way. Getting tangled in the sheets because yours have slipped off at the corner and you can’t fix it? That’s not the same thing. It makes me feel very sad when it happens and I can’t do the job myself. It’s such a little thing. Making a bed is something I’ve done since I was a child. And now I can’t do it anymore.
I’ve tried the sheet saver solutions, the corner catchers, all the little tricks for keeping sheets on the bed and none of them have worked very well. The only thing I haven’t tried yet is the layers trick–something I learned when I had very small children who didn’t always keep the bed dry at night. Layering fitted sheets and mattress pads over each other so that in the middle of the night you didn’t have to change a whole bed, just strip the top layers off so that there was a dry layer underneath and then tuck a child back into bed.
The difference here though is that I can’t tuck any of the top covers in after I strip off sheets. Which sometimes leaves things dangling on the floor creating a potentially dangerous situation for me as I get around the house. It’s just one more thing I can’t do.
One of the first things I gave up, before I really got sick, was driving. Before I knew what was going on, when my legs just felt funny and I wasn’t always moving the way I wanted to. I’ve never loved driving–it’s something that always made me nervous. And driving at night has always been a problem for me–I’ve got terrible night vision to begin with.
But I started driving less and less and eventually kind of stopped. Because it started feeling unsafe. When I couldn’t move my legs and feet as quickly as I felt I wanted to in an emergency, I started driving less and less. And I live in an area with limited public transit. I’m far from a bus stop, even if I wasn’t trying to navigate that distance with a walker or wheelchair. (To be honest, with the walker or wheelchair, there’s no way I could get to the bus stop right now, but that’s yet another way that many places aren’t disabled-friendly.) Not driving makes getting around and getting things done really difficult.
Public Transit and Independence
And yes, there’s paratransit, but there’s so much involved. First there’s the approval process. Then there’s the way you’re at the mercy of someone else. You need to rely on their schedule. You might need to travel well before or wait a long time after an appointment. Your ride might not show up at all–that can cause a cascade of other issues, too. Miss a doctor’s appointment and the office staff isn’t always helpful.
There are missed appointment fees, which isn’t something anyone likes but can be a really big deal for disabled people who are at a much higher risk for poverty than non-disabled people. And if you miss too many appointments you can be discharged from care. It can be hard to find knowledgeable health care providers. I just have to consider how long it took me to get a fibromyalgia diagnosis if I need a reminder about that.
Cabs, Uber, and Lyft are options, but with budgets as tight as they are, it’s really a limited option. From home to one of the hospitals (where I have to go to receive the specific care I need) is a $100 round trip even before tips. Going places just for fun, because I want to get out for a while, or because I need one or two things, doesn’t happen anymore. No matter how much I want that orange juice.
Cooking and Independence
Cooking is another place where I feel a lot of loss. In disability circles, there’s a lot of encouragement to take shortcuts where needed. You may remember the scandal over Whole Food’s pre-peeled oranges a few years ago, but for some people a pre-peeled orange might make the difference between having an orange and not having one at all. (We won’t get into the ridiculous price tag. Fun fact: pre-cut squash was sold in the markets of Pre-Columbian Mexico. So it’s not just a modern extravagance.)
But there are so many everyday things that people use that were invented to help disabled people where you never think about the original reason they were created. Bendy straws, Snuggies, speech-to-text. So many things.But none of that makes up for not being able to stand for a long time at the counter. Or trying to stand at the counter with my walker. How do you make things like risotto or teigelach that need constant stirring when you can’t stand for long? How do you manipulate things into or out of the oven safely when you need to maneuver a walker? It’s not like when I want to make a cup of tea and I can just put it into a travel mug.
Prepping things is different too. I can chop vegetables sitting down, but it’s very different from standing up. The arm motions are different. The angle of the knife is different. The point at which the knife has to balance to move efficiently and safely is not in the same spot. I find my arm gets tired much more quickly sitting down to prepare things than while I’m standing up. Rolling out things like pie crusts also changes when you’re sitting down. You don’t have the same leverage to get things rolled out.
I’m grateful that I’ve found a mini food processor to help, but that (of course) means more things to wash. Which is another difficult task. Whether it’s washing things in the sink (something I used to find soothing before standing to do it became painful) or loading and unloading the dishwasher, it can be a lot of work. And while paper plates are an option, they come with their own problems. They’re not exactly the sturdiest things, even if you put paper plate holders underneath them. And there’s my own guilt over the environmental impact, too.
No More Grocery Stores
Speaking of food, it’s been years since I’ve been in a grocery store. COVID worries aside, it’s one of those tasks that’s really difficult. If I go, I have to hope that an electric cart is available and fully charged. And if it isn’t, maybe there’s a staff person there who can push a cart and help me select items from the shelves. I need to make sure not to buy too many heavy things because I still have to get them home, then into my house, and then into my kitchen. I admit, there are days when I take the perishables in, put them away and leave everything else for another time when I’m feeling better.
So I pay for grocery delivery. But that means either an annual subscription to a service like Instacart or a delivery fee each time I need something. And it means paying the mark-up on the items–the prices in the apps are always higher than in the store. Then, on top of the mark ups and service fees, I have to tip the delivery person. Which I’m happy to do. But it all adds up.
Relying on Shoppers and Deliveries
It doesn’t end there. Because it means that I place an order and hope that the items I order are in stock. And if they aren’t, that the person doing the shopping is either making good choices about substitutions, or communicating with me to see what I want instead. And that when they pick up a product that they pick up the right one–the chewy granola bars, not the crunchy ones. The plain applesauce, not the cinnamon kind. Hope they’re choosing the best apples and not just the easiest ones to grab.
I miss walking through the aisles, being able to make spontaneous choices. I miss the delicious smell of the produce aisle, when they’re cutting fresh watermelon and even though it wasn’t on my list,I have to buy a small container because it just smells so good. Or seeing beautiful red peppers and deciding that I have to have them.
Independence and The Little Things
It’s easy for most people to imagine the big things that are difficult or impossible. And I do miss those. Honestly though? Those are the kinds of things that there are accommodations for. For travel. For going to Pride. Seeing a show. No, it’s the little things I have the most trouble with. The ones I do every day like taking out the trash where the accommodations aren’t there, and where I have to rely on cobbled together solutions and adaptations with the help of people like occupational therapists. And some little things I can’t do at all, even with help. Like taking a simple walk in the rain.
Even here at 2 Rules. Adam and I each write a column each week, and we get to feature so many beautiful photos that Adam takes. And I don’t have the same opportunity to take those photos anymore. Taking photos was something I used to love doing.
Public Policy and the Independence of Disabled People
On this Independence Day, I am getting tired of this country’s individualist attitude towards my independence or lack thereof. Yes, we passed the ADA which does provide some resources, but I’m constantly having to choose between lesser evils. If a disabled person marries someone with too high a salary, for instance, they lose their disability benefits. So I gained marriage equality as a queer person in 2015, but then lost it as a disabled person about four years ago when I got sick enough to become eligible for disability benefits.
Similar issues apply to the transportation problems I just discussed. Everything just takes so much time. Even if I applied for disability benefits (which I haven’t for other reasons I won’t go into here) the process is time-consuming. It drains a person’s energy at just the time when we have the least energy to spare and the least ability to afford a lawyer or accountant to help with the paperwork. Add to that the fact that if you have too much money in assets, you lose your benefits. So you can’t save up for things you might need like, oh, for example, a motor-powered wheelchair. And if you ever work too many hours and make too much money you lose your benefits.
No Neat Endings
I’d like to be able to give this essay a neat ending. To say here’s the problem and here’s the solution. But all of this is still in process. I’m still figuring out what I can’t do that I used to think I could. And I’m still trying to figure out ways to do things I used to think I couldn’t. What I do know is that I still have grief to work through over the independence I’ve lost. And I still do need to get better about asking for help when I need it. I do appreciate when people offer to help. It’s hard, I suppose, for people to do that in ways that don’t diminish what I am able to do, or feel disempowering.
But if people do want to offer to help, I hope they’ll find ways to say things like “I know asking for help is hard. And I know there are things that are hard for you to do. Are there ways that I can help that will enable you to do more of the things you can do?” Sometimes independence means needing other people. I’m learning, along with everything else, to be okay with that.