Posted in Advocacy, Autistic Identity

The Costs of Hidden Disabilities: Why it Costs More to be Me

There’s a good Huffington Post Canada article that details some of the costs about being Disabled.  The article focuses primarily on the big-ticket items (mobility devices, etc.) but does mention food costs can be more expensive due to dietary restrictions.  This is an area where the ABC show Speechless is very honest; the family does not live well.  One parent works and the other is thereby more available to help the Disabled child in particular, but also the traditionally-developing children, as needed.  This is not a luxury; it is a necessity.  They even move into the most run-down house in the nicest neighborhood possible.  Why?  Better opportunities for all of their children.  This is one way in which the show demonstrates privilege in the Disability community; the family is poor, but not so poor they can’t move somewhere else.  This is most definitely a privilege not all families have.

[Image: A white woman with light brown hair wearing a white blouse, grey skirt, and black pumps, holds up a white calculator with many dollar signs on its display. She looks in shock at the viewer, over her black glasses.]
 

Let me mention at the outset that there are government funds for Disability in the U.S., but they require a family to live in poverty in order to obtain the funds. They limit how much the family can earn and what the family can own.  The idea underlying this is that we’ll help you if you’re really, really poor, but these funds aren’t to help you live a life on par with the non-disabled person.  Instead, they are a ticket to government scrutiny and shame and to keep you from becoming more of a drain on the public’s funding.  The strings associated with such funds keep a poor Disabled person poor and Disabled, but they can be a lifeline for many.

I wanted to share with you some of our family’s expenses that are “luxuries” to some and to point out how they are not for us in order to understand the costs of being a family with hidden Disabilities.

The Family

We’re two married Autistic adults with ADHD without the Hyperactivity.  Our son is also Autistic, and has ADHD with the hyperactivity.  All of us communicate better in writing than in speech, and the two adults also have jobs that allow them to work at home at least some of the time.  My son is homeschooled, with a heavy focus on gaming and computers since they are part of his gifts and he will likely find work in those areas someday that will allow him to work at home.  I work full-time outside the house as a Catholic school principal.  This increased my hours (but not my pay, as it happens), and so I gave up my part-time job as a standardized test rater and scoring leader.  Still, I have to work at home a lot so I have to work online and also have access to a telephone for actual voice communication (though thankfully, my boss also likes to text/e-mail and saves the calls for rare must-talks).  My husband works full-time (and/or part-time; he works at the whim of his employer) and now works exclusively at home, but that means that we have to have reliable internet that’s fast. We have three cats who are adorable and we try to take good care of.

Electronics and Technology

Because of our work and homeschool needs, we have to have more electronics, in better condition than average.  We all have desktops that are super powerful and rebuild them every two or three years to keep them flying.  We have multiple monitors to ensure that we can work efficiently.  Each person also has a laptop as backup and to allow for times when we have to work in bed.  My son’s desktop finally died after closer to four years of valiant service.  Unfortunately, we do not have the funds to build him a new one right now, but he has a super powered laptop and a second monitor and he’s been able to work around it for now.  Laptops are less reliable than desktops, by and large, so we’re fretting the day the laptop dies since it’s being used so heavily.  But for now, he’s okay, and we’re hoping to keep things running until we have more funds available.

In addition to the desktops and laptops, there are the kindles (each of us has one) and ipads (each has one) and new-ish model cell-phones (ditto).  Because we communicate best in writing, we need our technology to be fast and also take text messages whether they be in chat, text, or e-mail format.  Newish-model cell-phones are expensive and have driven our cell-phone bill up.  Our internet bill is high, too, since we’re all online most of the time streaming various things, and we want to also be sure it works fine for our employers.  I am finally no longer required to have a landline because of work and we were finally able to cut the cable tv and finally argued ourselves down to $100/month for internet ONLY.  Yes, that’s what we pay for internet…no tv and no phone.  It’s so high because we need fast internet and live in an area where people don’t pay for fast internet.  When we lived in bigger cities, paying around $150-$175/month got us super-fast internet, a landline, and also all of the tv channels imaginable.  Here, fast internet is seen as a luxury and those of us who need it are taxed as a result.

If we had a shared computer or had to use the one at the library across the street, we would not be able to work from home which might put our son’s homeschooling at risk.  For our son, homeschooling is not a privilege; it is our attempt to prevent him from having the same PTSD my husband has which we attribute to his schooling experiences.  Further, we all work best if we work in separate corners of the house, so having one shared computer would involve significant amounts of stress as well as a steep reduction in income.  When my husband doesn’t work at home, he stresses out at work and he stressed out so much he quit on a leap of faith.  His new job is online, true, but it’s casual and he might someday be full-time, but for now, we gave up the health insurance (and must pay quite a bit through the marketplace) and hope that he gets work each week.  So far, we’ve been lucky on the work front, but we’re still digging ourselves out of the two months he had little-to-no work.  Anyway, having multiple computers and even back-up computers is necessary for us to live a life even close to “typical” because for us to support ourselves we have to work at home some or all of the time.

And living life this way is not cheap.

Oh, I almost left out the GPS. I have a very expensive one that is actually polite. If I do something she doesn’t expect, she doesn’t yell at me.  I need this because it gets real-time traffic and construction-type updates and tells me when I should actually arrive.  This is essential if I’m going to arrive in one place with spoons not all gone by the time I get there.  Traffic stresses me out (though I’ve always loved driving…in the country, where traffic is funny (cows got out) and not bumper-to-bumper), so without the GPS I couldn’t go to my grad school classes or drive to the “head office” of Catholic ed in our region.  I know the way to and from my university (and all over the metro, actually, I lived there for quite a while), yet I need the GPS because without it, I’d freak out enroute so many times that I’d have to come HOURS early to class to 1) avoid traffic and 2) settle down before class started.  Now, I can go much later and hold down a job.  Without the GPS, it would be impossible.

Good Smells

I’m sitting next to some Yankee Candles now.  I buy them in bulk, when they’re on sale ($100 gets you free shipping) and burn them whenever I’m at home.  The smells are able to calm me down and help me to focus longer.  There are cheaper candles, but the scent and “throw” of cheaper brands tends to be iffy, and sometimes you even get a downright “chemical” smell from them.  These are good ones.  I keep a good scent from them in the car (currently, it’s lilac) and my son uses their “car jar ultimates” as his “carry around” good smell for whenever we leave the house.  If he smells something bad, he starts smelling that to cancel out the “bad smell.”  These scents allow me to de-stress when “at home” work is stressful (it often is; other humans are involved) and allow our son to go out in public with a bit more confidence.

We could get by without them, but they reduce stress greatly allowing me to continue to work later and my son would be even less likely to take a chance on heading out to a new place where he’s not sure about the smells.

Eating Issues

I don’t eat red meat, my husband doesn’t eat much in terms of vegetation, my son eats a very narrowly-restricted diet due to having more severe sensory issues than we do (chicken strips, carrots (uncooked), broccoli (cooked), mozzarella sticks, string cheese, apples, bananas, popcorn, SuperPretzels (and regular, crunchy ones), and cereal are generally his rotation of choice; he also devours chocolate and candy and some limited baked goods, usually in the chocolate family).  When each person eats so differently, it gets expensive (have you ever tried cooking for one?  Short of eating frozen meals and injecting yourself with a ton of salt, it’s freaking EXPENSIVE).  So, we get drive-through a lot so each person gets what he or she needs or we just accept this is how we eat and my husband and I try to eat meals we can handle and we get our son whatever he wants, when he is ready to eat.  It’s laden with salt and calories, but the executive function is all used in the ordering process.  At home, you have to decide what to eat and actually prepare it next.

My son avoids this by making us decide for him and refusing to eat it if he’s not into it at the moment (bleh).  Way to rob our spoons to save your own!

Additionally, the stuff we like tends to be calorie-laden, and our impulse control sometimes can’t stop us from eating too much of it.  We are all overweight.  I have lost weight in the past (I found Richard Simmons to work for me since it categorizes food which worked better than Weight Watchers since I can “break” a points system pretty easily), but I have to focus on it.  If I focus on THAT, I don’t have the spoons to focus on things like being a mom and/or employment.  My husband can’t handle eating so many veggies, so he hasn’t yet found something that works for him.

As an added bonus, my husband and I are weirded out about eating in front of other people (ooh, look at the fat people eat!), so we avoid it.  I can eat at school since I mostly eat the school lunch and it’s what everyone is eating (ours is actually good and reasonably healthy, and my new cook makes sure we have veggies every day now).  But on days last year when the lunch wasn’t red-meat free and I couldn’t eat around it, I’d try a granola bar or something and it was never enough food so I’d be ravenous later.  My husband used to not eat on the days when people were in the office (which is why working at home has helped a ton) since he couldn’t handle the smells/action of the break room let alone the perceived judgment.  Having a school cook this year who not only has four kids with various preferences and food allergies has helped loads because I can eat something every day, and it will be filling.  I sometimes don’t need to eat when I get home anymore.

The alternative to eating in our “eat what you want” manner is us all stressing out and/or simply not eating.  We will all go hungry rather than eat something we find repugnant, which is why I thank God for my new cook.

Obviously these issues all cost us more than it would a family who can sit down and eat close to the same stuff and/or eat at normal lunch times in a normal way or if we were a family who could save the spoons so we had enough for both planning AND executing, but that doesn’t happen often.

Caffeine

I know you think caffeine is a luxury, but did you know it also helps those of us with ADHD to focus?  It’s best if it’s in a more natural “setting” like coffee or tea, but sometimes we don’t have the executive function for preparing it, so we’ll drink diet soda.  Yes, the NutraSweet will preserve our bodies for years after we are dead, but being able to complete tasks is important.

Caffeine isn’t cheap in soda format, but neither are the mistakes made from a lack of focus.  You can almost always get a Diet Coke (or Diet Dew, my husband’s preference) if you need it, on the go and there are plenty of times we need it.

Did you notice it tastes better in glass or plastic than in aluminum, too?  We can’t always afford it in that format, but it’s just an observation.

Housing

We are fortunate enough to own a home, though we bought it only about two and a half years ago.  Buying your first home at 40 is weird, but it’s how it worked out for us.  We bought a very large home so we would all have space to be able to work at home in our own areas.  We are not rich, so we had to limit our sights.  We have a postage-stamp yard (it’s sort of a win in that you can mow it with a push-mower…the kind they made in the 1900’s; no gas smell or loud noises!) and we are on a major street so it’s always plowed (at least).  We live downtown.  We have rentals on both sides of us.  We have to share a driveway (it’s somewhat long and hilly) with one of the rentals, and we’re supposed to be jointly responsible for the driveway even though it’s ours by law.  Let us say that I’m more obsessed with keeping a clean driveway and sidewalks than others since my dad had an insurance agency when I was growing up.  Finally, sold our second car and have to get by with just one, which is easier since my husband’s at home now and I work a few blocks away as the crow flies.  Due to the cursed river in between and the limited bridges to prevent poor people from moving freely in my neighborhood, though, it’s easier to drive since I have to walk quite far to get to the bridge and the promised footbridge over the water was GOING to be across the street from me…and then they moved it to the more commercial area to help the rich people get richer.

But I digress.

Regardless, we had to settle for a cheaper house that will not be easy to resell to get the space we needed.  Inside, it is bliss for us with high ceilings, thick walls, huge (new) windows and space…plenty of space…for all of us to do our projects.  The INSIDE is made for families like us, who are at home, unlike newer ranch-style homes which are made for families in which everyone is out and about.  We are blessed to have it, but we couldn’t have dreamed of affording this home without all the negatives on the outside.

 

Finances

We are bad with money.  Part of it is, I’m trapped because if I stop going to school, I’ll have to pay the student loans that are worth more than twice the value of my home.  But a lot of it is the ADHD and impulse control.  We want something, we’ll order it (online of course) and we don’t always have a good handle on how much money we have right now.  We’ve done better since switching to You Need a Budget (if you’ve never tried this software, we recommend the older, offline version since we struggled too much with the new version; we do hope to try the new version again soon).  We also did a LOT better when switching to cash equivalent.  We have a scrip program at our school where you buy gift cards and there’s a percentage the school gets back; in my case, it would go into my school and I spend way too much on the kids (how does an Aspie show her love?  Doing something.  How do you DO something when you have fewer spoons?  You buy something.) so this would be good for us from a budgetary and a financial perspective.

But we’re not good at patience and waiting and stuff.  Once it’s set up, though, we do well until we get lazy.

At any rate, this is a struggle due to our ADHD.  We hope to do better, but it is a lot of effort.

 

I’m sure there are others that I’m leaving out, but the upshot is, we have to spend a lot of money to even come close to being a “typical” family in a small ranch sharing one computer.  It costs us much more to approach the threshold of “normal” than it does a typical family.

But when you look at families who qualify for financial help, you can see there’s a huge gap between what they’re given (and brow-beaten in order to get it) and what they need.

I suspect this is how the “typicals” want it.  They don’t want us to get to where they are.

What things do you need that “typical” people don’t?

 

Further Updates: Since I started working outside the home, our costs have gone up considerably in terms of both ready-made meals and clothing for me.  Because I am a large person, but also have clothing sensitivities, I can’t just go to a local discount store and get clothing, so I have to order it from a reasonably-priced shop online (http://www.katiesmercantile.com) and sometimes it takes a while if I do a special order.   I order more than I need to make sure I have enough backups if I tear a dress.  I am blessed because I can eat at school, and my chef knows all of us have weird food issues (gotta love working in a Neurodivergent-friendly school) so there’s always cereal if I don’t eat a particular entrée and/or I can fill up on sides and dessert.  But sometimes when I get home, I find that my husband hasn’t prepared anything and I don’t have the executive function to do more than to push a button and these lovely people will bring us sandwiches, pizza, or fried chicken (only two places in town use the localish app, which does not require us to talk to anyone to order food, but has higher quality food than say, Pizza Hut).  People would criticize us eating out as often as we do (and lately, we can’t afford to do that, so our stress level has gone up and we’ve been fighting a lot more), but when we all eat different foods AND we have limited spoons at the end of the day, it is difficult NOT to eat out.  Unfortunately the two places that deliver with the app offer nothing our son will eat so they are still not perfect.

Biggest takeaway: we are financially better off (with more spoons) when we all work at home.  Period.  But working at home involves much, much more risk.  I had erratic hours then, and my husband does as well.  Now, I’m on salary, but I make less (but it’s consistent).  He makes more when he works full-time, but he can’t always work full-time, and neither of our jobs provide health insurance, so we have to use the marketplace.  Since I’ve left the home and my husband quit even going in on weekends (but now works for an Autism-friendly employer at home), we are hurting more financially than when I worked at home and this isn’t right because working out of the house is, objectively, harder on my family than working at home (for neurotypicals, it’s often the reverse).  Autistics need to be given the opportunity to work at home so they can actually use more of their earnings to live decently.  We pay more than neurotypicals in so many aspects of our lives that the more we can work at home, the more likely we are to enjoy the fruits of our labor.

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