Undercooked Blog Posts on Disability and Health Insurance: Part 3

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy - March 19, 2017

Post Three: 3 Questions for Lawmakers

All cynicism and partisanship aside, there are lawmakers who seem like decent people, but support cruel, nonsensical policies because they believe in AN IDEA. Right now, they are mostly Republicans, and they usually have more selfish motives for regressive tax-cutting and dismantling, rather than improving a moderately successful program like Obamacare. But most of them also say they are motivated by something like idealism ... for instance, belief in rewarding and incentivizing hard work, or giving people "a stake" in health care by making sure everyone has to pay something for it.

I would like to ask these members of Congress three questions about how their beliefs and ideals play out in the real world for disabled people:

1. Do you believe that when the government provides material support for poor people ... things like health insurance, disability, food stamps ... it is fundamentally bad for them?

2. Do you think that capping or cutting Medicaid will prompt significant numbers of disabled people to get jobs, and earn more money than they do now? Do you think that having to pay more for health insurance will make disabled people suddenly get healthier, and pursue cost-saving cures and therapies we previously ignored?

3. Do you believe it is better for people with significant disabilities if the government to pays for nursing home fees, rather than the cost of home care?

There is obviously some slant to these questions. The "right" and "wrong" answers are implied. At the same time, I think they are legitimate, honest questions Congress people should at least have to answer before they vote.

Undercooked Blog Posts on Disability and Health Insurance: Part 2

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting Saturday and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy

I worry a lot ... probably too much ... about overstating how awful and / or evil the Republicans' plans for health care are. Although I believe that more disabled people WILL DIE if the AHCA is passed, I don't believe that anyone of consequence actually wants that to happen ... apart from maybe the odd Twitter troll or Bannon acolytes who enjoy dispassionately discussing the benefits of having fewer disabled people to around to weaken our bloodline or whatever.

To me, the question of intent is almost beside the point. You can do a lot of damage to disabled people accidentally, and that's usually how we get hurt, both on the policy and personal levels.

I'm a small guy, 4 feet tall, and not super steady on my feet. Whenever I think of the danger to disabled people when hostile or indifferent politicians and activists get excited about big ideas and big changes, I think of myself trying not to get knocked over or trampled at a frat party. It's not that the revelers around me mean any harm. The problem is they don't notice I am there at all until it's too late. All they can do after backing into me is slur, "Oh, sorry little buddy ... didn't see you there!" and wander off. You see, they are busy doing other things, and they don't need to have it out for me to hurt me ... indifference is more than enough.

Politics is like that for disabled people, for the disability community. People have these other objectives and assumptions that may or may not be fine as far as they go, but they only rarely take the time to check and really see whether what they are doing will work for us, or whether their awesome ideas just don't apply to us.

By the way, this is somewhat of a nonpartisan phenomenon. I had to be careful in parties at my own fraternity in college, even though I felt comfortable with these people and they had a pretty good idea of my unique situation. The main reason I didn't support Bernie Sanders' Presidential run is that he never really took the time to convince the disability community that, for instance, "Medicare For All" would include the same or better home care and community services we get from Medicaid. I don't think for a moment that Sanders wants to institutionalize disabled people, but I'm still not sure he understands how that risk relates to health care proposals, even ones lots of disabled people would otherwise support.

At the moment, however, we are all living in a straightforwardly hostile frat, where angry, hyped up, brothers seem set on making the most of a newly won and unprecedented degree of freedom. They really do want to party like it's 1955, and we can easily get trampled in the process, because it seems like we simply do not exist in their vision of American Greatness.

Undercooked Blog Posts on Disability and Health Insurance: Part 1

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part One: 5 Basic Points

1. Most people don't really understand how health insurance works for disabled people. A lot of disabled people don't fully understand either.

2. Health insurance isn't something disabled people choose to buy "in case we get sick." It's something we have to have because we use it all the time, just to survive and function.

3. A subset of disabled people need what's broadly termed Long Term Care, which is everyday direct help to do basic self care, like getting out of bed, bathing, dressing, using the toilet, cooking and eating, etc. Pretty much the only health insurance that covers this over a disabled person's lifetime is Medicaid. Medicare doesn't cover it. Almost no employer-provided or individual market policies over it. Medicaid is the whole ballgame.

4. One way to control the cost of our care is to provide all the care possible in our own homes, rather than nursing homes and other institutions. Again, individual cases vary, but in general, supporting home care is cheaper and it's what most of us want anyway. But you have to be deliberate about doing this ... it won't just happen by lifting regulations and giving everyone theoretical "choices" with insufficient resources. And let's be clear, the savings from switching decisively to home care would be significant, but not revolutionary.

5. Individual cases vary, but overall, disabled people cost more to cover than pretty much everyone else ... sometimes a lot more. And there is almost nothing individual disabled people can do to mitigate this. Market flexibility, financial "skin in the game," and "personal responsibility" have little to no impact on our concrete needs. At best we can trim at the edges with assistive technologies and creative self-care techniques, but frankly, most of us have pushed the envelope on that already.

The point being ... there is really no untested way to save massive amounts of money on disabled people, other than to let us die or become permanent adult wards of overworked, under-resourced families. There is no super-obvious, low-hanging fruit of neglected solutions in this field ... aside from the fore mentioned shift away from nursing homes towards home care. Even that can only save so much. And there's currently basically nobody and nothing in the for-profit or even non-profit private sector that can meet the needs of disabled people without government funds.

There are no miracle cures for most disabilities, and their are no miraculous private-sector fixes to disability policy.

My Obamacare Story

The White House wants to hear peoples' personal stories about the Affordable Care Act, a.k.a. Obamacare. I think I know what kind of stories they hope to hear, but the format of their inquiry allows for open-ended, freestyle response, so here what I submitted:

I have had physical disabilities all of my life. Until I was 22, I was on my father's health insurance. He was an independent pediatrician, and I'm sure paid for the family's health insurance out of pocket, though I have no idea at all how much he paid. From my perspective as a child and youth, as far as I know, we never had any problem getting my many surgeries, braces, hospitalizations, and therapies paid for.

Later, my father went to work in public health, and got the family's coverage through the county and later the state he worked for. When I aged out of family coverage, I was able to continue my coverage through COBRA payments, which were expensive, but necessary since going without health insurance was not an option, and a break in coverage would have created a "pre-existing condition" problem for picking up subsequent coverage.

When I finished graduate school I was able to get health insurance from my full time job. My disabilities were never an impediment to full coverage. I paid 20% of the premium for a pretty good plan.

In 2012, after a little over 20 years of full-time work, my disabilities altered and progressed in ways that made it necessary for me to stop working full time. I again continued my work-based coverage with COBRA for about a year. Then, through a combination of the Affordable Care Act and New York State's "Medicaid Buy-In" for working people with disabilities, I was able to qualify for Medicaid and continue to receive it while doing the part-time work that was within my capacities. Having gotten Social Security Disability, I also eventually was enrolled in Medicare.

At the moment, Medicaid and Medicare pay for the ventilator and oxygen concentrator I use every night while I sleep, and for medications I take every day to make my disability-related chronic health conditions controlled. These are life-preserving treatments, and they also make it possible for me to work to the degree that I can. Also, on average, I am hospitalized once every two years or so due to upper respiratory infections. There are effective treatments for this, but of course hospitalization is prohibitively expensive if paid for out of pocket. Without Medicaid, especially, I would be forced into a much more dependent situation and my health would deteriorate severely.

The Affordable Care Act was an absolutely crucial bridge from one work / health situation to another. And Medicaid itself is one of the main foundations of the life I live now. In the future, should I need everyday home care, I know that Medicaid will be there as no other insurance can ever be ... unless Medicaid is significantly cut or made into something less than a direct entitlement. The Affordable Care Act has been a tremendous benefit to me. And by making it possible for me to work to my changing capacities, it has enabled me to continue contributing to my community in the work I am able to do and the taxes I pay.

Disabled people in particular really need to talk in detail about not only Obamacare, but Medicare, Medicaid, and overall what health insurance means for us.

Click here to tell your story.

Weekly Reading List

The week's best disability reading ...

The Radical Disabled Americans Bringing Direct Action to Your Town
David Perry, Pacific Standard - March 13, 2017

This article is so much more than news about disabled people protesting the current administration's health care proposals. It is a vivid portrait of the ADAPT style of disability protest. Like many ADAPT actions, it's neither grandiose nor trivializing. Best of all, David Perry gets to a crucial point for people who, like me, sometimes wonder about the real value of protest ... that it's valuable for more than what it literally accomplishes.

New Production of “The Glass Menagerie” Stars Wheelchair User Madison Ferris
Seth McBride, New Mobility - March 9, 2017

This is the next major frontier for disability representation. When I was growing up and a young adult, it was a big deal to see actors portray disabled people and tell disability-related stories. For while there, I don't think it occurred to me or many others that we might expect the actors to have disabilities, too. At this point, I'm about 90% of the opinion that disabled characters should never be played by non-disabled actors. Put simply, disabled characters should be portrayed by disabled actors. This "Glass Menagerie" casting does that, and more ... apparently underscoring and re-interpreting a component of the play itself, and what it means for a character to have a disability.

Disabled Youth & Vampire Slayers
Andrew Pulrang, Disability Thinking - June 5, 2015

An internet friend who blogs and tweets for Easter Seals surprised me on Friday by tweeting about an old blog post of mine, drawing connections between one of my favorite TV shows and an important aspect of the disability experience. She posted it, I think, because Friday was the 20th anniversary of the show's premise. I re-read the piece, and it's a lot better than I remembered it! In fact, it really is one of the best disability items I read last week.

Weekend read: Stuck in transit — Getting around Montreal in a wheelchair
Jason Magder, Montreal Gazette - March 11, 2017

I got to know a few accessible transportation activists in Montreal last summer, when I did a presentation there on #CripTheVote. That's why this Montreal Gazette article stood out. It's also just a really good example of disability journalism that centers on the experience and perspectives of actual disabled people.

How People Commemorate the Day They Lost a Limb
Serena Solomon, Vice - February 27, 2017

I think you can go back and forth to opposite extremes on the question of whether disability is something to have pride about, or something that's inherently sad. Sometimes, positivity comes off as trying to hard, or as a kind of "party line" the disability community insists on for semi-political reasons. On the other hand, too many people assume that disability positivity must be a performance. The truth is something in between. Everyone processes their own disabilities in their own ways. Sometimes, pride is a bit of a put-on, but maybe that's not such a bad thing. Sometimes, acknowledging a darker view can be a welcomed return to reality. Or, it can be wallowing, quite detached from reality in its own way. The bottom line is that we should probably just take everyone at their word and not worry about what's real and what's a facade. People do what they must to survive and be happy. Also, amputated limb cakes are cool.

Disability Blogger Linkup

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

If you are new to this, 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, April 12, 2017.

Weekly Reading List

Well, semi-weekly, but who's counting?

America needs to decide: is health care something we owe our citizens?
Abbie Gluck, Vox.com - March 6, 2017

This first article isn't specifically about disability, but it discusses the deep background of ideas about health care, which is about the most immediately relevant policy issue for disabled Americans today. I think it's important to discuss the details of health care proposals, but it's also important for us once in awhile to ask what peoples' views are on the fundamentals, especially people who have set themselves up as opponents of more progressive programs like the Affordable Care Act. When all is said and done, do you think everyone should be insured, or is health insurance a reward for some formula of hard work and, I dunno, virtue?

Inspiration and objectification of people with disability - a resource for teachers and parents
Carly Findlay - February 5, 2017

Carly has done a great service explaining "Inspiration Porn" in a more accessible way for people who tend to resist the whole notion. In addition to being put off by the term, I think some people simply aren't familiar with the practice of deep cultural criticism, in which you dig underneath surface, apparent meanings to find the sometimes contradictory meanings below. When your disabled, you tend to get it instinctively ... it just feels wrong. But if you're not, it probably requires deliberate intellectual work. That's a big ask for most people, but Carly's work here should help a lot.

More Than A Villain: Ivar The Boneless And Disability
Alice Wong, Disability Visibility Project - February 28, 2017

Speaking of deep cultural criticism, here's an intellectually rigorous but also fun example of unpacking a disabled TV character. It makes me think about someday going back to my DisabilityTV Podcast.

Okay, it's not "reading," but here are a couple more examples of what things seem to mean vs. what they actually mean ... seemingly harmless questions and comments people make to disabled people that aren't so harmless once you think about them for a moment, especially from the vantage point of actual disabled people. I have to admit, the British sense of humor helps a lot!

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.