Disability & Food: Results and Conclusions

120 people completed my online Disability & Food survey. That's a pretty good number, and the final results look pretty much the same as they have looked all along, which suggests they aren't just random. I don't know that I have any stunning conclusions, but let's see the results and explore what they might mean.

Question 1 "How often do you have the following kinds of meals?"

Results:

1. Home prepared and cooked (strongly weighted)
2. Cooked and prepared by someone else
3. Frozen dinners
4. Home delivery or take-out
5. Eating out at restaurants
6. School, college, or workplace cafeteria
7. Meal kits by mail
8. Meals provided in a residential facility

Respondent comments:

Home prepared once & ate for a few days like lasagna- often

Eat what's ready: fruit, chips, etc. Also try to cook batch like soup, stew, etc that'll last for days. I forget to eat & cooking for 1 when can only eat 1/2 cup at a time takes more energy & pain than it's worth.

I live alone.

Medical Formula, by mail

I work at a restaurant and very often scrounge from food orders that were messed up or good that is made specifically for the crew to eat. Plus I get an employee discount. But then there are days when I am too tired mentally/physically or in too much pain to expend energy making something myself. I really need to invest in a good delivery service. Recently I've invested in a business that will send you meal cups in the mail (like 24 at a time) and you just need to add water. I got them thru Amazon. I know I spend too much money on eating out but it often simplifies things, as well as cleanup.

My partner does the cooking now that my physical health has deteriorated further.

The majority of what I eat is probably "snack" food. My condition uses up a lot of salt, so I eat a lot of salty potato chips and gatorade. Otherwise it's stuff I can either open up and eat directly (cheese sticks, canned olives, jerky, etc) or stuff that requires a quick zap in the microwave (pre-cooked sausages, gluten-free corn dogs, leftovers from a restaurant, etc)

I am celiac, so I prepare most of my own food so that I do not get gluten-ed.

I frequently eat shelf-stable food that doesn't need to be refrigerated because I know that sometimes I won't be able to leave my room. So I stock up on things like granola bars and beef jerky a lot of the time.

What I can and can't eat, and thus how my food must be processed and prepared, is a huge part of my disability. I eat "frozen dinners" and packets of things I can heat in the microwave, but they all have to be prepared in my home from scratch, a few exceptions of specific brands of things in cans or boxes.

Only recently started cooking at home so much -- started treatment for my undiagnosed ADHD in November at age 45. Now I can more easily plan to cook and get the right items purchased in advance, and make time to prepare it. I've wasted a lot of emotions and food over the years on good intentions and poor implementation.

Refrigerated, microwaveable meals Microwaveable boxed pantry meals

i mostly eat food that i get from the grocery store and that comes out of the package edible... like bread. or fruit. everything else, i cannot prepare

I get the majority of my groceries via grocery delivery service. I assumed that counts as home delivery but wasn't sure. That being said, while I do my own cooking, my mobility tends to dictate how elaborate my meal will be. Not that my meals are really that elaborate lol but how much spoon / labor will be involved. For an example, my kitchen is not fully wheelchair accessible, and so if I want to reach certain cabinets etc., I need to be able to get up out of my chair. So there are times, I just don't have access to certain foods in my kitchen and will eat whatever I can reach. For this reason, I very very rarely use the stove. Me and the oven are BFFs though lol

Thoughts:

I was surprised to see home preparation and cooking pretty far in the lead. I guess I assumed that disabled people would be less likely to do their own home cooking than most.

If you look a little deeper, you see that even though home cooking came out on top, only 40% say they do it all or most of the time, and most respondents seem to rely on a roughly even mix of home cooking, cooking done by someone else, frozen dinners, and delivery / take-out.

Several respondents note in their comments that they rely heavily on home cooking because of very specific dietary needs related to their disabilities. This is a wrinkle that I had not anticipated at all, probably because I have never had any health or allergy-related food restrictions myself. Nor am I a vegetarian. In fact, I've only recently started to think much at all about the quality or healthiness of my diet. I'm not sure if that's a privilege or a liability.

One thing that promoted me to set up this survey is the recent popularity ... at least in the media I consume ... of home delivered meal kit subscriptions, like Blue Apron and Hello Fresh. So, it's interesting that this option got the next to lowest score of the 8 options I offered. Maybe it's the high cost. For me, it's because the recipes all sound too fancy and hipster for my tastes. In all of the ads I've heard for these services, I have never yet heard a described recipe that sounded appetizing to me. Besides, they sound convenient, but probably still require a lot of labor before you can actually chow down.

Q2 Sources: "How often do you get your food from the following?"

1. Supermarkets (very strongly weighted)
2. Someone else shops for you
3. Delivery from online shopping sites
4. Neighborhood markets or farmer's markets
5. Convenience stores
6. Delivery from local stores

Respondent comments:

I V fluids via medical supply

I interpreted 'online shopping sites' to include online supermarket ordering and delivery.

Where your questions only go down to almost never it's actually never which you haven't got

Protein powder online. Shopping is usually once a month. Buy to last. Maybe occasional trip out. Shopping is painful.

I shop for my own groceries.

Due to coordination, vision limitations I cannot use the apps/smartphone/do financial transactions on smartphone or computer, which prevents me from shopping online and most delivery places. I often go hungry as a result.

Grow my own food - very often

Local non chain shops, butcher, fishmonger , greengrocer ( fruit, veg & healthy groceries e.g.. GF products, ) good quality and locally grown organic produce etc quality breads, sheep/goat yoghurt etc.

The only money I have for buying groceries is my food stamps, so I'm very limited in where I can buy food. If I eat out it's always my partner paying.

I am celiac, so I prepare most of my own food so that I do not get gluten-ed.

Staff take him shopping

I live in a city with multiple food coops. I shop there most often, but no one store carries all the foods I need in a week. Food shopping involves stops at two to four stores a trip. I do not drive and public transport is inaccessible to me. I need rides for all of this.

Thoughts:

Supermarket shopping comes out on top, by a very wide margin. Again, that surprises me. I probably should have added a question or two about transportation and geography though. Most people consider supermarkets the best and most economical place to get groceries, but I wonder how many disabled people can't use them easily because they live in places without supermarkets and lack transportation to get to them.

The next two most heavily weighted categories ... someone shopping for you and takeout / delivery ... both rely on others, and probably also can be done without leaving home. These are the kinds of options that one would expect to be popular among disabled people. But again, they're not as heavily relied upon as one might conventionally predict.

Respondent comments bring up diet restrictions here, too, but also limited income and physical inaccessibility as factors that shape and restrict how people get their food supplies.

Q3 Disabilities: "Which category(s) best describe your type of disability? (check any that apply)"

97 with physical disabilities
51 with mental health disabilities
31 with sensory disabilities
20 with other cited disabilities
19 with cognitive disabilities
15 with learning disabilities

Respondent comments:

developmental disorder

Language

Severe food, environmental (including inhalant) allergies--often requiring hospitalization

Autism

Autism (unsure where to put that)

Eyes fatigue easily, and after many years of difficulty and little help due to invisibility of my disability (which is TBI) I am exhausted and don't h ave energy for interacting with others, constantly teaching, explaining etc. since no one understands.

chronic illness

In addition to mobility disability, have medical conditions affecting diet

hearing loss, food allergies

health disability, autistic

Autism, then not listed above- 1 of my kids is autistic, one has Down syndrome, both have anaphylactic food allergies, I have a medical concern that requires me to eat a totally different diet than my partner and kids

Visual

Autistic with sensory sensitivities, IBS, Coeliac, Lactose intolerant, Hypothyroidism, Chronic Fatigue Syndrome, Cancer survivor surviving radical surgery, heavy duty chemo, radiotherapies, Restless legs Syndrome, insomnia, and more, GAD

Food allergies play a major role in my eating/shopping habits

not sure where autism goes in here. also chronic illnesses

Chronic pain/traumatic brain injury

Autistic, and irritable Bowel Syndrome and PCOS. Not a fun combo.

Chronic illness- asthma

Medical conditions

Type 1 diabetes

Thoughts:

I probably should have included a few more disability types, since there is a lot of overlap and ambiguity among these very broad, generic categories ... particularly mental health, cognitive, and learning disabilities. I also wish I had added a chronic illness category for people with conditions that more readily fall into that category.

On the other hand, I think allowing people to choose more than one category means we get a pretty good picture of who is responding, and the vast majority of respondents had some kind of physical disabilities, sometimes along with others.

So?

Those are the survey results, in detail and summary. But what about my own shopping and eating habits?

I do most of my grocery shopping online with delivery by mail. I order once a month. I've only been doing this for about 4 months though. Before that, I shopped at a supermarket about once a month, and picked up things at convenience stores here and there. Even though I drive, my shopping was definitely too irregular, physically difficult, and unnecessarily expensive.

Before I started grocery shopping online, my biggest problem was getting fresh fruit and vegetables, buying household supplies in bulk, and getting anything large or heavy ... like big bottles of milk, juice, or soda, or big bags of sugar (for my twice daily tea).

I eat frozen dinners about half the time. A quarter of the time I eat take-out, and another quarter is conventional home cooking.

Speaking of fruit ... and the mini-controversy last year about whether selling pre-cut or packaged fruit is wasteful or accessible ... I do buy pre-cut fruit and bagged salad, as well as large boxes of single-serve fruit cups.

I often think about these new meal kits by mail services, but I never seriously consider them because they are expensive. And anyway, their big selling point seems to be that you don't have to worry about ingredients or portion sizes. I used to have that kind of problem, but at this point I know pretty much what I will and won't actually prepare and eat. For me it's not hard to figure out. But for others it might be more of a thing.

Conclusions:

I don't really have any, except for this:

If I had unlimited power and resources to make one radical change in American society, I sometimes think I would institute free public breakfast buffets. Two things make me think about this:

TV shows about the British upper class, where everyone just comes to the dining room in the morning and the servants have laid out a full range of breakfast foods on a big sideboard.

Motel chains that offer free breakfast.

My life would improve enormously if I could easily got to a big breakfast buffet every morning and just dish up a plate of whatever looked good. You could do the same thing with lunches or dinners, but for me, breakfast is the thing. I love breakfast food, but it tends to be labor intensive, and my body is at its worst in the morning. It's the time I need good food the most, and am least equipped to prepare it.

What new kinds of food or shopping services would improve your life and independence? What changes have you made in this area that have made a difference in your life? Are these strictly matters of individual planning and innovation, or are there larger-scale systemic changes that would be both feasible and helpful to disabled people?

Share more of your comments below! And thanks for helping with this survey!

Disability & Food: First Survey Results

On February 18, I posted a survey looking for data on the shopping and eating practices of disabled people ... or at any rate, of disabled people who read disability blogs. Today I'm going to share preliminary results from the 52 people who have responded so far. I would like to get more responses before commenting, so I am leaving the survey open for another week.

You can take the survey by clicking here.

If you have already done the survey, please share it with other disabled people you know, on other platforms.

Next weekend, I'll close the survey, post the final results, write a little about why I'm interested in food and disability, and offer some notes ... maybe conclusions, too ... based on the data and comments.

Here are the results so far:

Respondent comments:

What I can and can't eat, and thus how my food must be processed and prepared, is a huge part of my disability. I eat "frozen dinners" and packets of things I can heat in the microwave, but they all have to be prepared in my home from scratch, a few exceptions of specific brands of things in cans or boxes.

Only recently started cooking at home so much--started treatment for my undiagnosed ADHD in November at age 45. Now I can more easily plan to cook and get the right items purchased in advance, and make time to prepare it. I've wasted a lot of emotions and food over the years on good intentions and poor implementation.

Refrigerated, microwaveable meals Microwaveable boxed pantry meals

i mostly eat food that i get from the grocery store and that comes out of the package edible... like bread. or fruit. everything else, i cannot prepare

I get the majority of my groceries via grocery delivery service. I assumed that counts as home delivery but wasn't sure. That being said, while I do my own cooking, my mobility tends to dictate how elaborate my meal will be. Not that my meals are really that elaborate lol but how much spoon / labor will be involved. For an example, my kitchen is not fully wheelchair accessible, and so if I want to reach certain cabinets etc., I need to be able to get up out of my chair. So there are times, I just don't have access to certain foods in my kitchen and will eat whatever I can reach. For this reason, I very very rarely use the stove. Me and the oven are BFFs though lol

Respondent comments:

Staff take him shopping

I live in a city with multiple food coops. I shop there most often, but no one store carries all the foods I need in a week. Food shopping involves stops at two to four stores a trip. I do not drive and public transport is inaccessible to me. I need rides for all of this.

Respondent comments:

not sure where autism goes in here. also chronic illnesses

Chronic pain/traumatic brain injury

Autistic, and irritable Bowel Syndrome and PCOS. Not a fun combo.

Chronic illness- asthma

Medical conditions

Type 1 diabetes

Weekly Reading List

I had a harder time than usual coming up with five good articles to highlight this week. Maybe it's the Winter doldrums ...

Why "School Choice" Is Problematic For Students With Disabilities
Kris Guin, Thinking Person's Guide To Autism - February 15, 2017

This article does a pretty good job of calling attention to something I've thought for several years could become a huge political and policy problem in the world of "special education." Despite pretty good laws and regulations for making sure kids with disabilities get quality integrated education, kids and parents still struggle almost everywhere to make their schools comply and actually deliver. One result is that in frustration, parents of means increasingly turn to homeschooling and private "special" schools just for disabled students. Some of the most capable advocates basically give up on mainstreaming and chase the false promise of safety and specialization ... making segregated schooling for disabled students look like a premium option, rather than exclusion. The more this happens, the less pressure there is on public schools to do what they're supposed to do. I worry that Betsy DeVos' Education Department will embrace this even more, thereby creating the impression that they are catering to "special needs families," while in effect dodging their responsibilities.

Disabled, Shunned and Silenced in Trump's America
Melissa Blake, New York Times - February 15, 2017

This new installment in the New York Times' first-person series on disability directly addresses the anxiety of disabled people in the early weeks of the Trump Administration. I can relate. However, Blake focuses on two things that to me are pretty thin reasons for worry ... removal of disability-themed government websites and Trump's mocking last year of disabled reporter Serge Kovaleski. It's not that these are unimportant or insignificant signs. It's just that their exact significance is still hard to read. Meanwhile, very easy to read, concrete policies are already forming that we don't have to guess about or interpret. Still, it's not unusual for disabled people to have to rely on instinct instead of clear signaling to figure out where we stand. We need to keep our eyes on both what's actually happening, and on what may happen if our worst instincts turn out to be accurate.

Dear world: It isn't that hard to include my child with special needs
Ellen Seidman, Love That Max - February 16, 2017

It's a simple message, but one we sometimes forget. Inclusion usually isn't hard, and it often depends more on attitude than on actual logistics.

Canada is a progressive immigration policy dream - unless you have a disability
Carolyn Zaikowski, Washington Post - February 3, 2017

I have read more in-depth discussions of Canadian policies on immigrants with disabilities ... Kim Sauder's is excellent ... but it's important to see the issue in a mainstream publication like the Washington Post.

The Arc Responds to House Republican Leadership Plans to Repeal the Affordable Care Act and Decimate the Medicaid Program
The Arc - February 17, 2017

This is an unusually strong and detailed take-down of the latest Republican plans for health care. The fact that it comes from the Arc is doubly remarkable. For most of my life, the Arc embodied the traditional, medical-model, segregated and parent-centered wing of the broader disability sphere. It has also been the kind of national disability organization that has been carefully apolitical, trying hard to to offend potential supporters by being to strident and public in their advocacy. It's good to see that the Arc is finally coming down off the fence, seemingly on the more valid but challenging side.

Disability & Food

I want to write about everyday strategies disabled people use for shopping, cooking, and eating. I can write about what I do, but I'm curious about others in the disability community. So, do me a favor and complete this survey, so I can see what might be interesting to discuss.

Create your own user feedback survey

4th Blogiversary

Disability Thinking is four years old today. The blog has definitely gone through phases. I started out trying to blog daily, because there didn't seem to me many disability blogs with new content every day. After the first couple of years, I stopped posting standalone photos, and started to go more towards posting better stuff a bit less often. Now I am trying to settle into a weekly schedule where I post something new and substantial at most twice a week.

I think maybe a year from now will be a good time to either stop blogging as I've known it, or recommit to a more frequent schedule and short, simple content that looks more like a diary again.

That's the great thing about blogging. The format is easy to change, and you don't have to run it by a boss or committee to do it.

Disability Blogger Linkup

It's time for the February, 2017 Disability Blogger Linkup!

If you are new to linkups, click here to see previous Disability Blogger Link-Ups. The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not the main page of the website it's on.

To make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you have any trouble making it work, or any questions, feel free to email me at: apulrang@icloud.com

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, March 10, 2017.

Throwback Thursday

Three years ago in Disability Thinking ...

Two Down, One To Go
February 9, 2014

Three years ago, it looked like we might be seeing a boom in disability on TV. Three shows premiered in the same season with important disabled characters ... two half-hour comedies and one hour-long police procedural, which was also a remake of a classic series from the '60s and '70s that featured an iconic disabled character. One of the shows, The Michael J. Fox Show, even had a disabled character played by an actor with the actual disability. Growing Up Fischer had an exceptionally talented and well-liked cast, plus some innovative storytelling techniques. The shows all looked promising.

All three series failed though, and they were all so "meh" that I don't remember any anger or mourning in the disability community.

The next big news for disability on TV came a year later. It was American Horror Story, with the season titled Freak Show, about an ensemble of literal early 20th century "freaks"... that is, disabled, physically deformed people ... in a traveling show. "Freak Show" was divisive just within the disability community, even before the first episode aired. Proponents pointed out that some of the disabled characters were played by actors with the actual disabilities, and argued that depicting the real-life historical abuses of "freak shows" could provide a platform for promoting more progressive messages about disability. Detractors countered that no positive "messages" imaginable could overcome the ugly stigma and visceral trauma of watching a show about the cruel exploitation of "freaks."

As it turned out, "Freak Show" was something of a dud, too. It was neither as exploitative as feared, nor as revolutionary as hoped. It had moments of both horror and insight, but the show itself was too flawed in other ways to boost any really positive or even interesting ideas about disability.

I guess that's one of the key things about disability on TV. No matter how "good" the disabled characters and disability stories are, if the show itself is weak, it won't work, and it won't matter.

Today, we have Speechless, a character-driven, family-based comedy that is largely, though not exclusively focused on a nonverbal teenage boy who uses a wheelchair. The show has done a lot to get the disability details right ... including casting a disabled actor to portray the disabled teen ... and the disability community mostly loves the show. But the reason that even matters is that the show is good in general, and it is broadly popular.

I wonder if the creators of Speechless studied the failed disability shows of 2013/14 to identify what worked, and be alerted to what didn't. If so, those disappointments appear to have been worth it.

Weekly Reading List

Since I took a couple of weeks off from blogging, this week's reading list is playing catch-up.

Will Disability Rights Have a Permanent Place in the White House?
David M. Perry, Pacific Standard Magazine - January 26, 2017

The title question never really comes up in the article, but it's the question you want to ask after reading it. The article is actually a lovely talk with Maria Town, who had a job in the Obama White House specifically dedicated to the disability community. I'm feeling very nostalgic about the Obama Administration right now, but I think even if you didn't like him, if you're a disabled American, you almost have to have felt good that there was a smart disabled person working in the White House on disability issues. I think there should always be someone in that job in the White House, even though I can't at present begin to imagine who that might be or how it would work out in the Trump Administration.

Watch the Appointments
Ari Ne'eman, Sometimes a Lion - January 22, 2017

I'll make this short. If you want some expert analysis of the actual political landscape facing the disability community right now ... and you want it to be sober and non-panicky, but also realistic ... read this. Every time Ari writes or speaks about disability issues, he covers lots of familiar territory, but adding an extra layer of depth that doesn't usually make it through into disability activism Tweets and Facebook posts.

Why I've Given Up On Being Healthy
Jody Allard, BuzzFeed News - January 24, 2017

If I include an article on this list it usually means I like it, but this really is one of the best articles on disability I have ever seen in a mainstream publication. It's an account of one person's journey with disability, but almost by accident it ends up being

I Don't Speak for Laura
George Estreich, New York Times - January 27, 2017

There's so much standard smarm and sentimentality from parents writing about their disabled kids ... so when a parent shows a modicum of self-reflection and humility on the subject, it's gold to me. That sounds like I'm minimizing this piece, but actually I think it's really good. This belongs on the list of Essential Reading for "Special Needs Parents."

Take Me As I Am: Dating and Disability Etiquette
Vilissa Thompson, Easterseals Thrive

Vilissa is one of the best disability bloggers / writers out there, but she usually writes about somewhat heavier social justice topics. So it's great to read her thoughts on dating and disability. I wish someone had given me something like this when I was a teenager, wondering whether dating and relationship topics were even applicable to "someone like me." Add this to the "Essential Reading for Youth with Disabilities" list.

Blogging Break

I’ve got a lot of catch-up work to do, so I’m going to take a blogging break until the first week in February.

Affordable Care Act Repeal

There are two aspects of the disability community’s discussion about possible repeal of the Affordable Care Act that I think need more clarity. First is the enormous variety of reasons, good and bad, that people have for opposing the ACA. The second is what the actual consequences of repeal would be, (with or without replacement), for people with disabilities.

Over the weekend I did some brainstorming on these questions, which I want to share. I’m not going to go into depth on each item or observation. I just want these ideas out there.

First question: Why do people oppose the Affordable Care Act?

1. Philosophically & morally opposed to government involvement in another major industry -  healthcare.

2. Philosophically & morally opposed to the individual mandate to buy health insurance.

3. Believe good health insurance is a reward for hard work, not a universal right.

4. Want better health insurance, but don’t trust the government to handle it right.

5. Believe the ACA is too much of a gift to private insurance & pharma industries.

6. Want a single payer national health insurance program.

7. Unwilling to sacrifice any (more) of their own wealth to make things better for others.

8. Wealthier people who resent paying higher taxes on their excellent private health insurance plans.

9. Marginally poor / working class people who resent paying premiums on the ACA markets while others get Medicaid.

10. Blame rate increases on the ACA, even though rates almost always went up each year BEFORE the ACA.

11. Still associate the ACA with the website rollout debacle.

12. Unaware of how crucial the ACA has already become to tens of millions of people.

13. Don’t understand how popular parts of the ACA, like covering pre-existing conditions, depend on unpopular parts, like the individual mandate.

14. Some younger, healthier people would rather pay extra-low premiums for very bare-bones insurance plans that the ACA prohibited.

15. Confusion … some honest, some willful … between repealing the ACA and fixing its flaws.

16. Not clear on what the ACA is, what Obamacare is, or how health insurance even works. It’s all confusing and yuck!

17. Believe the ACA is a disaster because “everyone” says so.

18. Instinctively don’t believe that Trump or like-minded Republicans would really do anything truly harmful.

19. Believe that some are just panicking, while others stoke the panic for partisan political reasons.

20. Compelled to undo Obama’s signature accomplishment because … well … OBAMA.

Note that you don’t have to think all of these things at once to oppose the ACA. In fact, some of these reasons come from polar opposite ends of the usual political spectrum. And, it should go without saying that I, personally, do not subscribe to all or most of these reasons. It should go without saying, but I feel like I should say it anyway. I love "Obamacare." It enrages me that a few slightly different election outcomes in the Midwest and we would be discussing serious plans to make the ACA better. But, things are as they are, and instead we're on the defensive. So ...

Second question: What are the likely consequences for disabled people if the Affordable Care Act is repealed?

First of all, let’s talk about people dying. Saying "disabled people will die" probably sounds like politically motivated exaggeration to a lot of people who aren't familiar with disability issues. Disabled people WILL die of course, if the ACA is repealed. Even if is replaced, if it is replaced with any of the models Republicans in Congress are batting around now, people will die who wouldn't have died otherwise.

However, premature death isn't the only consequence of ACA repeal for disabled people. To mention just a few others:

1. Ending Medicaid expansion in states that opted to implement it would cause many medium-income disabled people to lose Medicaid eligibility.

2. Losing Medicaid means losing home care, which many disabled people absolutely must have in order to live independently and productively.

3. More disabled adults would have to continue living with parents, or go back to living with parents, curtailing their life development and exhausting families physically, emotionally, and financially. 

4. Many disabled people, deprived of work, unable to function independently due to loss of home care and other supports, would wind up in the care system of last resort: nursing homes ... paid for by Medicaid once every penny the person has is spent.

5. Most disabled people need and use health insurance all the time, not "just in case." We can’t shop around or risk going without in order to economize.

6. Chronic and delicate medical conditions would go untreated, or inadequately treated, resulting in more illness and disability, which is both traumatic and costly.

7. Lack of health insurance, and insecure health insurance, makes it much harder for disabled people to get and keep secure employment.

8. Disabled people who have jobs that include health insurance would be trapped by their jobs, unable to pursue better, more suitable employment opportunities.

9. Not being able to stay on parents' health insurance in the early 20s would make independence and starting strong careers much harder for disabled youth.

10. Disabled people who have managed to cultivate fulfilling life goals and dreams would be thrown back into sheer survival mode, to nobody’s benefit.

These consequences are serious enough, without even considering an actual death toll.

So, what does all of this suggest about how to confront ACA repeal? I don’t know. Maybe just that while we hammer away at the broad, blunt concept of ACA repeal, we also need to pick apart the opposition and take time to explain in detail what it all means specifically for disabled people.

Yes, it's annoying and offensive that we keep having to explain ourselves. But if ever there was a time to repeat the obvious to people who should already know, this is probably it.