Because itās a thing that Iāve been thinking about a lot lately, hereās a post about disability and finances. There are a lot of hidden costs that come with being disabled, and I feel like we should talk about that more often⦠Moreover, I feel like there are a lot of things that are considered āluxuriesā for most people that become necessities when youāre disabled. And the weird sense of shame society has associated with buying luxuries, especially when our income is low (a problem that affects a lot of PWD), contributes to a lot of mental health problems for impoverished people, but it affects PWD in a special way, I thinkā¦
Iād like to break all that down a bit.
First of all, I am disabled. I have several chronic pain/illness issues that I deal with on a daily basis. Iāve talked more about that here, if you really need details. Iām going to walk you through the additional expenses I accrue on a regular basis because of my disability.
Day-to-day accessibility. I possess a manual wheelchair that I canāt use often due to where I live, but I mostly use canes and painkillers to get around. Specialty wheelchairs can cost thousands (and the electric scooter I used to use for specific situations was Very Expensive) but these days I get away with mostly spending about $50-$100 a year on canes and cane tips, plus maybe $100 more for constrictive clothing. (Plus special shoes and inserts, but I can get away with replacing those less often. Good thing because they cost a damn fortune.)
More difficult to assess, monetarily, is how much extra I pay to live in an accessible apartment building. I had to search for a long fucking time to find one. Like I said, itās not a very accessible area. I pay a lot more than I would if I could have a walkup or even a bottom floor apartment that has a few steps. I donāt feel comfortable talking about my exact rent, but I would say that I probably pay at least $200-400 more a month than I would if I could get one of those walkups down the street. I probably pay at least $500 more than I would if I didnāt need to be right next to specific bus line because I canāt walk far. Thatās uh. Thatās a lot.
If I ever end up living in a two-story house, I know I will need some kind of chairlift. (Which are mildly terrifying to use, but I havenāt died yet.) That would probably cost at least $6k, which is money that I pretty much have to add to any house price, along with perhaps a modified kitchen. I can barely use the one I have now, frankly. That sort of cost is hard to even get my head around, though, which is probably why Iāll live in an apartment building with an elevator pretty much forever. lol
Transportation. The reason I live in my not-very-accessible city is because some days I can barely walk and itās not safe for me to drive. What does that mean for me? I had to move to a place with good public transportation, which means a major city. And, like I said, it means I have to pay extra for a home thatās well-located amongst that public transportation.
Now, I canāt use the subway here, and many of the regional rail stations arenāt accessible, either. There are accessible subway/train stations but not many ā and they gotta be accessible on both sides! Otherwise Iām trapped underground, which is not fun. Thatās taken some uh. Creativity.
Generally, though, when itās a location I canāt easily reach by bus, or Iām just too tired/in pain to stand at a bus stop, I need to use a Lyft. (Uber is cheaper than Lyft, but has also historically been extremely abusive towards disabled riders.) This can add up really quickly, especially if I need to travel to another city and I can use even less of the transportation. Iāve had months where I have $50-$100 in Lyft bills, in addition to the money I pay to use public transportation. This has especially been an issue if I need to buy something from a specific store (and obviously canāt walk there or carry it home) or if I need to go to a medical specialist.
Which brings me to the third and fairly obvious thing, medical costs. Now, when I was younger and being bounced between doctors, my medical costs were astronomical, and there were extended periods when I just didnāt see a doctor because our insurance didnāt cover it. These days, I do need to go to the doctor fairly often, but maybe only once every month or two. (I need to see several specialists and uh. Frankly speaking, I need to add a few more but Iāve been leery of the costs. I definitely need to access therapy, both of the mental health and physical variety.)
Between doctor visits, medication, and testing bills, my medical costs are often about $1000-$3000 a year, sometimes more. One medication I just started would have been $100 a month before my pharmacist pulled a few strings and saved my damn life. And I have insurance. So you can see why Iām not accessing all the medical care I need. This really is a specifically American problem; our healthcare system is a disaster, especially for people with longstanding and/or confusing illnesses, and our current administration is only trying to make things worse. Iāve uh. Iāve had a lot of anxiety about this lately.
The dreaded grocery costs. When you cannot drive and you cannot carry things home, you have three basic options. a. You can use grocery delivery services. b. You can eat nothing but takeout. c. You can starve to death.
When I first started living on my own, Iāll admit I mostly did b. But as I grew more used to my body and its limitations, Iāve transitioned to a. (Though c was almost an issue a few times when I got stubborn about costsā¦) Takeout is unhealthy and expensive. Groceries are still really fucking expensive, but at least now I get fresh fruit and vegetables. I use FreshDirect for my groceries! Iāve tried other grocery delivery services, but FD is one I ended up with. I pay $130 a year for them to deliver my groceries (you can pay by the delivery, but I need fresh groceries fairly often, so itās cheaper to just pay the flat yearly rate) and the groceries themselves are more expensive than youād pay in your garden-variety supermarket. BUT I canāt use the supermarket. So expensive groceries, here I come. I generally pay $50-$100 a week depending on what I need and how lucky I am with sales. So, usually about $300-$400 a month. Give or take.
I also have an Amazon Prime membership. I recognize that Amazon is basically evil, but it is also literally the only way that I can quickly and efficiently get necessities like toilet paper, light bulbs, kitchen utensils, etc. I canāt just run out to the store to buy things. If something in my apartment breaks, I am stuck with it until I can have tools/a replacement sent to me. Both FD and Amazon need at least 24 hours notice to get me something, and if I used other websites, Iād have to wait longer and pay more. (Though if itās something like milk or eggs I desperately need, I can pay Wawa or GoPuff to deliver them to me. More delivery feesā¦)
Amazon Prime costs $99 a year, plus a little bit of your soul. But unfortunately, you donāt always have the luxury of choice when youāre disabled.
And then for specialty items that I canāt get from FD or Amazon, those are all individual delivery fees. There is a coffee place five blocks from me that I like to support with my business, but I generally canāt carry coffee beans five blocks, so sometimes I have that delivered. (Which isā¦embarrassingā¦) This means I donāt drink much coffee, lmao. I cut back on a lot of things that I just canāt easily access.
Help in daily life. This is a thing that a lot of disabled people need to pay for to some degree; Iām lucky in that I donāt need to pay for a permanent caregiver or anything. I do need to tip people handsomely every time I travel because of all the wheelchair help I need, though. Things like that. I also occasionally get my house professionally cleaned because let me tell you how gross your apartment gets when you canāt get out of bed. Every time I feel like pretty much The Worst Person for paying a ton of money to have someone else clean up my messes, but I assure you, the alternative is just living in some terrifying house out of Hoarders. (Note: those people are often mentally ill and deserve help, not mockery.)
It was recommended to me that I think about a service dog, and frankly, thereās a lot that one could help me with! But I canāt walk one. And supplementing my ability to walk a dog with professional dog walking is outside of my price range. Because itād be like $50-100 a week for one extra walk a day. So uh. So much for that idea. lol. (Plus youāre really supposed to walk them yourself⦠Which is not a thing I can do⦠And I wonāt be unfair to a dog just because I canāt freaking walk.)
idk, there are just a lot of actual things you canāt do that you end up paying other people to do for you, which leaves you feeling like a bourgeois asshole. And speaking of whichā¦
The Nice Stuff. A lot of things on this list would probably be considered luxuries (house cleanings, grocery deliveries, Lyft) but these are the things that seem so luxurious that I feel irresponsible whenever I buy them, even though they help with my health. Aromatherapy. Expensive snacks. Bath odds and ends.
Like letās get something straight. A nice citrus smell on a POTS day helps lower my nausea and focus my mind through the brain fog. A hot bath with special salts makes me dizzy but also relaxes pained muscles. I eat expensive specialty snacks so they donāt make me sick. But they all still feel like luxuries, and I still feel so guilty when I buy them. To some degree, a treatment for chronic pain and illness (as well as other disabilities that involve a lot of pain and negative side effects) is just making yourself more comfortable. It helps with pain relief, managing symptoms, and stress, which in turn helps your overall health.
But buying ātoo manyā creature comforts, especially when you have a low income, is really frowned upon in our society. A lot of these āluxuryā items on this list would get you a side-eye from someone who doesnāt get what youāre going through, and I think thatās also internalized in us. Hell, I have had people judge me for spending my money on some of these things, and Iāve found myself echoing their words inside my own head. That Iām wasting money. That Iām spoiling myself. That I just need to try harder to get through things. Donāt I know that others would kill for my opportunities? If I have so much extra money, why not donate more than I am now?
Frankly, I donāt think that way of thinking is healthy for anyone, but for PWD, who are already being told each and every day that theyāre a burden on society, it can be outright dangerous. Violence against PWD (committed by strangers, family, caregivers/medical professionals, or their own damn selves) is absolutely rampant, and itās often fueled by that kind of rhetoric.
I am lucky; I have a full-time job with health insurance. Despite a lot of issues, I managed to get a degree from a good school. So for the most part, I can afford these little things that I need. A lot of people with disabilities canāt. Maybe they need an electric standing wheelchair or specialized surgery and their insurance wonāt cover it. Maybe they need an accessible car/van ā I knew a woman once who had to pay $80,000 to get a van she could use. Maybe they need to pay for a part or full-time caregiver. Maybe they need some kind of therapy. Maybe they need to renovate their home with something like an accessible kitchen or a doorbell designed for people with hearing impairments. Maybe they need to pay for a speech-to-text program. Maybe they need to take care of a service animal. There are so many costs that accompany being disabled, and disabled people tend to have less income on average to pay for them because they are less able to get well-paying jobs or attend good schools. Some people have severe disabilities that prevent them from working, others just donāt have access to the accommodations and/or social acceptance that would allow them to do so. Neither should be ashamed. They shouldnāt be ashamed of their lack of capitalistic production, or for purchasing things that allow them to live their fullest lives.
There are days when I sit in my apartment, hungry, because I am too sick to cook food and too stubborn to order delivery. There are days when I sit looking at my favorite aromatherapy site (Paintbox Soapworks, natch) and dither for hours over whether I should get something thatāll help with my nausea. Days I force myself to walk home and then collapse in bed, pained to the point of tears, because I didnāt want to call for a ride. These are feelings experienced by a lot of people with disabilities, this struggle between the things they need and the things they have been taught they are irresponsible to buy. Some people donāt have this choice at all if they donāt have the money to buy things in the first place.
Itās a problem. Itās not a problem I can fix. But Iām trying to unlearn these judgmental feelings, and I hope I can help others do that as well. Iām hoping to show what additional expenses PWD have to deal with so we can all be a little more understanding of the choices we have to make, and the difficulties that those around us are facing.
If youāve read this far, thank you very much. If you feel like youāve learned something, you can support me and my writing via my ko-fi. And please, please be kind to each other.