Q&A: Cooking With Disabilities

[snowangel]

for myself, I had a vertically banded gastroplasty last year and am on a permanent pureed diet, weetabix morning, noon and night (unless I get all crazy and have a protien shake) so ideas for smooth textured (but flavourfull, I'm so sick of bland food) foods are always more than welcome!

Courtesy of AlexP (who served these at our most recent Twin Cities gathering):

White Gazpacho

and

Roasted Vegetable Gazpacho

They are both outstanding. You'd have to forgo the peeled grapes in the White Gazpacho, but that's not to say you couldn't puree some grapes and serve them alongside and add a bit to your spoon.

I'll do some searching, too, on EG. I recall at least one other thread about a diet of pureed food.

[snowangel]

Check out these threads

100% Pureed Lunch

and

Pureed Hell

In the last link, I really like SuzanneF's congee suggestion.

[TrishCT]

Jenn,

Like your mom, I too have MS. I had the "pleasure" of spending time last year in and out of the hospital with IV treatments. Much improvement noticed, but I still have recurring symptoms - numbness, fatigue, etc..

I love to cook and I agree with Judith Benton's great suggestions for ease in the kitchen. Pre-cut veggies and salads have become my best friends. Any way we can get fresh fruits and veggies into our diet is good. If the market I shop at is high quality, I will also buy chopped things from the salad bar, this is especially helpful for stir frys. And if you need to buy your garlic cloves peeled and chopped in a jar, I'll never tell.

Conserve your strength. For grocery shopping, I take my son, daughter or hubby to do the heavy lifting. I buy a lot of doubles in one shopping trip so I can make less trips. My husband pours the pasta out of the pot. I never boil lasagna noodles now that no-boil noodles are here. They work surprisingly well.

If you are buying a new deep freezer, get an upright, refrigerator-like one rather than a short rectangular one, it's much easier on your back.

The crock pot in the winter and the grill in the summer are helpful for easy cooking. I use a simple gadget that attaches to my table to peel apples for apple pie, it's quick and gives me the strength to focus on my pie crust. I also have learned to appreciate simple, straightforward recipes. There's a time and a place for challenging ones, but for day-to-day living, the simple ones suit me fine. Italian Meringue Buttercream is out, Ganache is in.

This course is exemplary, thanks E-G!

[lovebenton0]

Check out these threads

100% Pureed Lunch

and

Pureed Hell

In the last link, I really like SuzanneF's congee suggestion.

These are good links whether you must eat pureed food or not.

[ingridsf]

Like everyone else, I have to say how wonderful this class is. Being too tired to eat because of my breathing is something I have to watch out for, so a special thanks for the tips on cook-ahead stuff.

The best bits for me are the resource links for manual aids and in particular the pizza wheel tip for slicing onions. Geez louise, onions have been the absolute bane of my cooking existence for the past two years. Every single dad-blamed recipe I want to use calls for onions -- alright, not the peach cobbler but everything else. That reminds me -- frozen organic fruit and frozen puff pastry shells are so easy to make desserts with. Add ice cream, chocolate sauce, a little brandy, liqueur, or an unholy mixture of all and dig in. No slicing required.

As I've said elsewhere, I've got a disability I've had all my life -- muscular dystrophy -- that is degenerative so I'm usually making gradual adjustments to incremental loss of function, especially in my hands and breathing. On the plus side, what I do have are a butch digestion and a glutton's imagination. ("The Lord giveth, yadayadayada.") I'm glad you're doing this course because I still get bummed out sometimes that I'm too tired to cook the meal I want, or that I have to figure yet another alternative to some basic task, like draining pasta without lifting the pot.

The hardest thing for me though is not cooking, per se. It's getting the food, or to be more exact, finding the acceptable level of compromise regarding quality. It's great that foodies insist on fresh, organic and/or locally grown, antibiotic-free stuff. I care about sustainability. But I work full-time, am on two boards, write fiction, my friends are equally busy, and I have limited paratransit with which to travel. Frankly, I don't WANT to use Safeway delivery but it's the easiest and cheapest. It's a source of guilt as well -- shouldn't I be supporting farmer's markets, etc.? And I won't even go into the gastronomic trauma that is Safeway proscuitto. I desperately want to be a control freal about what I buy but cannot be.

Okay, last thing. A lot of us eGullet types know that food has a political dimension and I sure believe that disability issues are political issues. Being able to choose, prepare, and enjoy my own food are rights and pleasures I deeply value. Thank you all so much for putting this course together and bringing us closer to one another through it. Can't wait for parts 2 and 3.

Ingrid

Edited May 20, 2004 by ingridsf (log)

[ingridsf]

I don't have any real disabilities, yet,

I'll save you a seat next to me at the meetings. We're currently on Chapter 7 of "Disabilities for Dummies." It's called "How to Make Friends and Ask Strangers to Grab That Thing on the Top Shelf."

Ingrid

[specialteach]

The hardest thing for me though is not cooking, per se.  It's getting the food, or to be more exact, finding the acceptable level of compromise regarding quality. It's great that foodies insist on fresh, organic and/or locally grown, antibiotic-free stuff.  I care about sustainability.  But I work full-time, am on two boards, write fiction, my friends are equally busy, and I have limited paratransit with which to travel.  Frankly, I don't WANT to use Safeway delivery but it's the easiest and cheapest.  It's a source of guilt as well -- shouldn't I be supporting farmer's markets, etc.?  And I won't even go into the gastronomic trauma that is Safeway proscuitto.  I desperately want to be a control freal about what I buy but cannot be.   

Ingrid, have you thought about finding a local CSA (community sustained agriculture)? Depending on the CSA for a fee they deliver a bag of fresh produce to your door. Now is the season when there is finally a crop to harvest and a great time to join on.

You can find day 2 here. There is discussion of adaptive materials in both sections. The manual food chopper might help with dicing onions.

Edited May 20, 2004 by specialteach (log)

[Mayhaw Man]

That reminds me -- frozen organic fruit and frozen puff pastry shells are so easy to make desserts with. Add ice cream, chocolate sauce, a little brandy, liqueur, or an unholy mixture of all and dig in.

Ingridsf-

I think that the argument that these are HOLY items when combined with abandon and glee can pretty easily be made.

I stand with all who have praised the authors of this class. It is truly inspired and wonderful work.

[specialteach]

This link is for the organic consumers website csa page. It has a list of different csa around the country.

[John Whiting]

At a much lower level of seriousness, there are some dedicated foodies who develop sensory disabilities, either temporary or permanent, such as loss of smell, which can make one relient on extremely strong flavors and those sensations that may remain; e.g. heat, salt, sweetness. I realize that this is a totally different area from physical disabilities involving motor functions.

Please join us for Part Three/Sensory Issues.

Part Two also addresses some of these issues. So much is interrelated. Our three perspectives touch on many different aspects of disabilities.

I'm fascinated. This is of course at a lesser level of seriousness than motor disability, but I find it curious that it's not a subject often treated (or perhaps it's merely my own ignorance). A few years ago after a respiratory ailment I spent a year totally without a sense of smell. It was a challenge I'd rather not face again.

[ingridsf]

That reminds me -- frozen organic fruit and frozen puff pastry shells are so easy to make desserts with.  Add ice cream, chocolate sauce, a little brandy, liqueur, or an unholy mixture of all and dig in.

Ingridsf-

I think that the argument that these are HOLY items when combined with abandon and glee can pretty easily be made.

I stand with all who have praised the authors of this class. It is truly inspired and wonderful work.

Oh, verily, say ye, Mayhaw Man. Especially when thou:

1. Wait patiently for fruit and pastry to thaw/bake, respectively, before adorning and gobbling.

2. Select the platter as your serving vessel rather than the under-sized "dessert plate."

3. Are generous with thine guests, apportioning one Pepperidge Farms Box of Pastry Shells per Big Hungry Boy/Girl, saying "Get thee behind me, ATKINS," if necessary.

And to you, specialteach:

Thank you, for the csa tip. Actually, I got The Box a number of years ago, and am thinking of trying a similar but not csa business called planetorganics. It sounds kind of like a minor problem but buying produce this way requires -- quite appropriately -- a bit more effort to clean, trim, and bag up stuff for storage until use. The other issues are coordinating delivery from more than one supplier (I'd still have to use Safeway), and making sure they actually bring delivery up the stairs. Writing these little things up makes me feel like I'm being a princess but it adds up fast, as I'm sure you get.

On to Part 2!

Best,

Ingrid

[lovebenton0]

At a much lower level of seriousness, there are some dedicated foodies who develop sensory disabilities, either temporary or permanent, such as loss of smell, which can make one relient on extremely strong flavors and those sensations that may remain; e.g. heat, salt, sweetness. I realize that this is a totally different area from physical disabilities involving motor functions.

Please join us for Part Three/Sensory Issues.

Part Two also addresses some of these issues. So much is interrelated. Our three perspectives touch on many different aspects of disabilities.

I'm fascinated. This is of course at a lesser level of seriousness than motor disability, but I find it curious that it's not a subject often treated (or perhaps it's merely my own ignorance). A few years ago after a respiratory ailment I spent a year totally without a sense of smell. It was a challenge I'd rather not face again.

John, we also felt that this topic is often ignored. Food-related sensory issues can be very serious. We just can't live without eating! Although not the same as other physical or intellectual disabilities, the problems can be distressing, and debilitating, making it difficult for the person to enjoy eating and to maintain sufficient nutrition in their diet. These issues often reflect just one aspect of the disabilities a person is dealing with, or they may be the main problem.

So glad your olfactory issues have passed without permanent loss. As in your case, sensory issues can affect our lifestyle, as well as the food we eat. My father lived without a sense of smell and very little taste for over 30 years. As a child I thought that he ate some of the strangest things. He depended predominantly on texture. More on that in Part Three tomorrow.

[ingridsf]

I've been quite overwhelmed by this all today, and can't stop thinking about how we all have been dealing so long with quite serious challenges, not just to health and all, but to good eating. (Not that there's a distinction, of course!) But of course we've all kept stirring, and mixing, and chewing, and in some cases, restrictions seem to have honed our skills and appreciation, despite being a depressing load of responsibility at times. I would NEVER have guessed there were so many of us, however you want to define "us."

Makes me want to say, Hey, let's meet up and celebrate eating, and cooking, and learning and we'll call it the Real Slow Food Movement, where everybody's got a place at the table,' to mix in a number of bad puns. Speed is, like, so overrated.

I think we need a festival of some kind. I'm going to think about this. Probably over something to eat.

Ingrid

[lovebenton0]

And to you, specialteach:

Thank you, for the csa tip. Actually, I got The Box a number of years ago, and am thinking of trying a similar but not csa business called planetorganics. It sounds kind of like a minor problem but buying produce this way requires -- quite appropriately -- a bit more effort to clean, trim, and bag up stuff for storage until use. The other issues are coordinating delivery from more than one supplier (I'd still have to use Safeway), and making sure they actually bring delivery up the stairs. Writing these little things up makes me feel like I'm being a princess but it adds up fast, as I'm sure you get.

On to Part 2!

Best,

Ingrid

You're not being a princess, Ingridsf! This is what we're doing here.

It is difficult for me to get to the store or a market also. I can no longer drive. Believe me, you wouldn't want me on the same road you're traveling on!

We are fortunate to have a garden, and a long growing season in Central TX. However, that hardly supplies us with everything we need. My mr picks up little necessities when needed then takes me to the store or market about once every one to two weeks -- often my only outings for the entire month. But sometimes I am here alone for a week or so and it is more problematic then. Bringing home a lot of food at once to clean and store is a problem when those activities are difficult for one, as they are for me also. It is a real consideration when determining how you will order food. Additionally, I note that your schedule leaves you little time to complete these daily tasks. When I cannot complete that all at once I just do it in stages -- and try to eat some of the tougher to prep for storage foods first.

Even the garden or good neighbors sharing a volume of food to deal with at once can be a real chore. Right now I have 20 lbs of peaches to peel, cut up, and preserve before they go bad. A wonderful gift from my neighbors but still a major task. I sat for hours today prepping peaches for jam and still have about half of them left to do. Of course spiced peach jam, and a cobbler, will be worth it.

[Chad]

Part Three is an excellent way to round out the course.

Seems like a good place to link to the Chemotherapy: Cooking for a Patient thread as it deals with many of the same issues.

Great work, folks.

Chad

[babka]

finally read through the entire class and wow!!!

I'm so impressed, and forwarding links to everybody I know--Congratulations!

[specialteach]

I would personally like to send a huge thank you to babka for her help on my section. You may not be a favorite person among teenage boys, but you are one of mine!

One of the things I love about eG is that all that matters is our love of food. In my noncomputer world I am constantly thinking about "do I tell them about my illness" and "are my medicinally induced food issues making me look crazier than usual?"

Coming out of the illness/disability closet is a difficult decision. There are days when I want to shout it from the rooftops, but then I remember our society still has a long way to go with acceptance of others.

Hopefully this course will help people realize that we really are just like everyone else.

[Mottmott]

One of the things I love about eG is that all that matters is our love of food.  In my noncomputer world I am constantly thinking about "do I tell them about my illness" and "are my medicinally induced food issues making me look crazier than usual?"

Coming out of the illness/disability closet is a difficult decision.  There are days when I want to shout it from the rooftops, but then I remember our society still has a long way to go with acceptance of others.

Hopefully this course will help people realize that we really are just like everyone else.

No, unless it is too great a burden for you, you should come out of the closet. Limitation is our common fate. It’s all degree. Do not become “invisible.”

Ironically, our society often treats those with greater than average limitations with callousness, impatience, or indifference. And yet many not only transcend those limitations in their personal lives but can achieve in their public lives eminence denied to most of us. Witness a scientist such as Hawkings or painters such as DeKooning who made some of his most poetic paintings in the last stages of Alzheimer or Chuck Close whose paintings after his stroke rival and perhaps surpass anything he did earlier.

Further, all of us will experience some degree of impairment at some time in our lives either from accident or illness which may be temporary or from the creeping diminutions of time. We need to incorporate this reality into our society's values and practices.

[SethG]

This will sound stupid, but I just read the second and third installments of the class and I just feel compelled to thank the three of you again for your hard work. Inspirational.

[KatieLoeb]

Further, all of us will experience some degree of impairment at some time in our lives either from accident or illness which may be temporary or from the creeping diminutions of time. We need to incorporate this reality into our society's values and practices.

Very well said, Mottmott.

[ingridsf]

One of the things I love about eG is that all that matters is our love of food.  In my noncomputer world I am constantly thinking about "do I tell them about my illness" and "are my medicinally induced food issues making me look crazier than usual?"

Coming out of the illness/disability closet is a difficult decision.  There are days when I want to shout it from the rooftops, but then I remember our society still has a long way to go with acceptance of others.

Hopefully this course will help people realize that we really are just like everyone else.

No, unless it is too great a burden for you, you should come out of the closet. Limitation is our common fate. It’s all degree. Do not become “invisible.”

Ironically, our society often treats those with greater than average limitations with callousness, impatience, or indifference. And yet many not only transcend those limitations in their personal lives but can achieve in their public lives eminence denied to most of us. Witness a scientist such as Hawkings or painters such as DeKooning who made some of his most poetic paintings in the last stages of Alzheimer or Chuck Close whose paintings after his stroke rival and perhaps surpass anything he did earlier.

Further, all of us will experience some degree of impairment at some time in our lives either from accident or illness which may be temporary or from the creeping diminutions of time. We need to incorporate this reality into our society's values and practices.

You better believe it. The numbers are troubling. Just in California, there are 6 million people with disabilities. As the population ages, access to nutrition, housing, and health care diminishes, and the judicial backlash against the Americans With Disabilities continues, more and more people will, ironically, become disabled.

My focus is on women and girls with disabilities. The wretched truth is that the unemployment rate for women with disabilities is 76%, with two-thirds of that group expressing the desire to work. 40% of women with disabilities report no source of income, earned, benefits or public assistance. They are solely reliant on family and friends, which for some permits survival but places them at risk for caregiver abuse and depression.

As many of us who are disabled keep saying, changing attitudes is the way to help us. We have to be out and proud of who we are, just like other communities. That's why this course, and the responses are so heartening to me. Good food keeps me happy and given what some of us are up against, anything that sustains us is hugely important.

Best,

Ingrid

[snowangel]

Further, all of us will experience some degree of impairment at some time in our lives either from accident or illness which may be temporary or from the creeping diminutions of time. We need to incorporate this reality into our society's values and practices.

Very well said, Mottmott.

I echo your sentiments greatly.

One of the things that is hardest is pity and staring. I remember being at the grocery store a few weeks ago. There was a woman who had a child, similar to Heidi, and she was struggling to get the shopping done with this child. Having been there, done that, I offered assistance. Her first reaction was "I don't need your pity." I explained that I was not coming from pity, but rather understanding of just how difficult tasks can be that most of us find simple.

We don't need people asking "how do you do it?" Most of us living with disabilities (be it ourselves or someone for whom we are providing care), we do it like everyone else. Every morning, the alarm goes off and we start a new day.

For those of you with friends, relatives, co-workers, neighbors with disabilities, I invite you to ask them about their disability -- respectfully. Not with pity, but genuine interest. Last summer, I had a long conversation with my cousin Trent about his mental illness. At the end of our talk, he thanked me, and added that disabilities are something that most people don't want to talk about, and often it is refreshing to be able to talk about the disability -- honestly, so someone who is listening and not judging.

As Heidi gets older, her severe mental retardation is more and more apparent and visible. It cuts Diana and Peter to the quick when we are out in public and people look at Heidi with distain or make comments that are loud enough for us to hear. Our friends who have spent a lot of time with her have come to appreciate the many, many gifts she has to offer.

As I said earlier in this Q & A, it has been a pleasure to present such personal information to such a remarkable audience.

[lovebenton0]

One of the things I love about eG is that all that matters is our love of food.  In my noncomputer world I am constantly thinking about "do I tell them about my illness" and "are my medicinally induced food issues making me look crazier than usual?"

Coming out of the illness/disability closet is a difficult decision.  There are days when I want to shout it from the rooftops, but then I remember our society still has a long way to go with acceptance of others.

Hopefully this course will help people realize that we really are just like everyone else.

No, unless it is too great a burden for you, you should come out of the closet. Limitation is our common fate. It’s all degree. Do not become “invisible.”

Ironically, our society often treats those with greater than average limitations with callousness, impatience, or indifference. And yet many not only transcend those limitations in their personal lives but can achieve in their public lives eminence denied to most of us. Witness a scientist such as Hawkings or painters such as DeKooning who made some of his most poetic paintings in the last stages of Alzheimer or Chuck Close whose paintings after his stroke rival and perhaps surpass anything he did earlier.

Further, all of us will experience some degree of impairment at some time in our lives either from accident or illness which may be temporary or from the creeping diminutions of time. We need to incorporate this reality into our society's values and practices.

I believe that the only way that people's attitudes and misconceptions of people with disabilities will be changed is to be more exposed, not less, to realize they know and interact with people with disabilities every day of their lives. Mottmott is right -- it is all a matter of degrees.

During the construction of this course I was asked if I knew the number of people in the US that are affected by disabilities. I said I knew there were many millions, but did not know the head count. So I looked. Well to be brief about this -- the current US census says that approximately 1/5 of the population of the US is affected by disabilities. 20% of the population. The numbers are staggering. Our representation and acceptance is minimal in many areas.

Degrees.

Some of us couldn't hide our disabilities if we wanted to, obviously. For others -- their disabilities are not as apparent. None of should have to be invisible, but sometimes that is the protective cloak we choose surround ourselves. The more we can educate people through daily living, accomplishing, enjoying the options we have available to us, the greater I think our chances are of being accepted, individually and as a whole. We don't have to shout it -- we can just be ourselves.

One of my personally favorite quotes I heard from a quadraplegic writer who lives in a modern day iron lung. I saw him on TV -- I have to watch captioning to keep up with dialogue and missed his name. If I knew the name of the man to contribute it to it would be in my signature line. He said, in reference to people with disabilities:

"The two most misleading statements are 'Disabled people can't do anything.' and 'Disabled people can do everything.' "

Edited May 21, 2004 by lovebenton0 (log)

[ingridsf]

You said that so well, Susan, about assistance and how hard it is to be visibly different from other people. Of course I don't know the woman you offered help to, but what I noticed was that you offered. You didn't step in and start assisting without getting her permission. Had she been I, you would have gotten a different and more positive response. People don't always respect my personal space and I see-saw back and forth between resigned education and simply being pissed off when a stranger grabs my arm to lead me or pats me on the head. I'm small and fragile-looking but I'm also an adult woman who doesn't want some strange guy grabbing her.

I've had almost 40 years of growing into who I really am, which includes having muscular dystrophy. Yet I still balk at asking for help that no one, really, seems to mind giving. I think one of the hardest things for me is that I want to take care of people, too. This is one reason why I like cooking so much. But sometimes it's been hard for my family and men I've been involved with to let me fill that role. My little nephew has shown me that he doesn't have a problem with me taking care of him, which has been totally great.

Thanks to all again.

Ingrid

[specialteach]

Mottmott, if only the world was as accepting as you are.

I work at a school whose sole purpose is to treat special education students. One would think that in an environment such as this I could be open about my illness.

Unfortunately this is not the case. There is a parent at my school with the same illness. The year I had her daughter I was shocked at the comments I heard. And these are from educated, supposedly sympathetic people. If I have concerns and work where disabilities and illnesses are the norm, imagine what it is like for others.

There are days when I want to shout from the rooftops (both physical and virtual) that I have this disease. I would love to tell the world that most of their assumptions about me and people with my illness are wrong and I can do more than they imagined. Someday I will, but the US has too far to go before I can.

Most people in my non-work life know about it. There is nothing I love more than people asking questions. Nothing makes me happier than educating people about what I go through on a daily basis. There is no stupid question, as long as it is a sincere one.

I also believe you have to be able to laugh at yourself and your situation. Life is just too hard if you don't.