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.

Disability Blogger Linkup

I'm shifting to a monthly schedule of weekend-long Disability Blogger Linkups instead of bi-weekly. This is January's linkup, all ready to be packed with disability writing goodness.

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, February 10, 2017.