We will be leaving this website up as a good reference and archive, but do not plan to write any other entries on this site.

Check out our writing about living with disabilities and chronic illness (including personal challenges and victories, along with macro-level social and cultural issues) in two places:

• User Friendly Vegas: A project dedicated to promoting universal design through multi-media, including a docucomedy about living in Vegas with limited mobility.
• CWD: Couples with Disabilities: An expert blog on Psychology Today addressing living life as a PWD and a caregiver.

Please note that some of the links on this website are broken. If you visit User Friendly Vegas, over time you will probably find more up-to-date links there.

As always, if you want to know all that we are up to, visit our company website: SINdustry CITY, where we try to keep all our projects updated.



Thanks for your support over the years!  Looking forward to seeing you elsewhere on the web!

Cheers,
Pattie & Carl

Help us with pre-production of our new documentary, User Friendly Vegas:

I've been doing a lot of thinking this spring about my life, my career and my identity. It is probably because my 55th birthday looms large this summer,  but it is also because I've been stuck in a rut for some time. 


I am a vagabond at heart. I have lived in a lot of places and traveled to even more. If I were rich, I'd probably live in an RV or on a houseboat and move every two months or so, never going to the same place twice. 

So when I realized in January that I had been living in the same apartment for 5 years, I also figured out that is the longest place I've stayed put in my adult life. My average in number of places per year is over 2. Yep, I've averaged 2 places a year for 38 years of adult living and that includes several places where I lived for more than 2 years. My record number of moves in one year was 6 times (not counting the year I live with hubby and brother in an RV). 


We moved on May 1 to a much better place--mostly accessible place. It is more modern and healthier for us and only slightly more expensive. If I am stuck here for 5 years, I probably will not mind as much. The last place was, uh, let's just say substandard. I find myself these days feeling grateful for odd things like electricity, running water, garbage disposal, dishwasher, washer/dryer, air conditioning, closets, storage space and ventilation.  We had a couple of those things at the old place but none in good working order. 


It is funny how one can adapt to substandard conditions if one feels they must. I really didn't realize until after the move how much I was sacrificing. I guess the short of it is, the past 5 years have been rough. Moving has given me hope.


But I am still feeling a bit out of joint, and surprisingly, lonely, disconnected. I've always been somebody who can't have a party because none of my friends would get along with each other. I have always been an intersection rather than a team player, meaning that I know people from a number of cliques, but was never part of any particular clique. 


I was too white-trash for the intellectuals and too smart for my neighborhood, too tom-boy for the geeks and too geeky for the athletes. I was too "free-spirited" for the religious and too "metaphysical" for the atheists. Too capitalist for the liberals and too anti-corporate for the conservatives. I'm not sure if this means I'm an individual or if my dad was right and I'm just "contrary."


Lately, I've been feeling this feeling again. I feel too disabled for fat folks and too fat for disabled groups. I have mobility issues, but I'm able to walk for a bit and most of my chronic disabilities are invisible. I am in pain almost all the time. But I don't show it often, except to my husband. I have become stoic in many ways when I'm out and about. If I can't achieve that stoicism, I stay home.

It doesn't help that I really haven't had a best friend for many years now, except, of course, my husband. But that is a lot to put on him. I used to have a small circle of girlfriends who I could turn to and who would turn to me. I don't know why this happened. One theory is age. Another is the Internet, which is really (sadly) my primary way of meeting people with any depth. Living with pain means withdrawing socially, so maybe it just that simple. In fact, I chose to write this on Ample Ramblings instead of Fattypatties because my pain is probably defining me more than anything else these days. Or, it may be that it is what constrains me most.

It would be nice, however, to connect. I have been reaching out to a few women for whom I have respect in an effort to move past the loneliness and find some friendship. It has helped.


As a sociologist, I study groups and group dynamics, but I also study identity and how groups shape our sense of ourselves. Not belonging any where specific has shaped who I am and how I think about myself. I know this, but it brings me little comfort to tell you the truth.


Here's what I know in this moment. I am (an interesting phrase when you think about it) many things that have social meanings: female, white, "late-boomer," fat, person with disability, chronically ill, teacher, writer, artist, working-class, intellectual, Ph.D. and so forth. But I am also what I enjoy, what I desire, what I envision, what I create. 

So as I contemplate the remainder of my life during the next 7 weeks leading up to my 55th birthday, I hope to be making some changes, maybe even some you would call drastic. 


I remember Patrick Swayze once said in an interview that the cure for burnout was "a calculated risk." I plan to risk being myself a little more often and let's see where that takes me. I really want to be more than my pain.


Stay tuned!

I just spent the last 19.5 hours taking a bus to Phoenix and picking up a car from my brother. I wrote the following on my blackberry, while on the road and then emailed to the blog. The only editing I did was to add a video and a picture. Everything else was written pretty much real time. This is a slice of disabled traveling by a sociologist who loves to watch people.

Two weeks ago, after all the trials and tribulations of getting the van back up and running, the transmission broke. We found ourselves without a vehicle. When the weather is kind during the non-hell portion on the year, taking public transit in Vegas isn't that bad. Buses run often. RTC claims to have the most modern fleet in the country.
I've been a regular on public transit in New Orleans, Atlanta, Boston and Victoria BC. I've had various reasons for usage from no alternative to lack of parking to just enjoying the train. Las Vegas stacks up well. I was surprised because my experience as a tourist on the strip was not so pleasant.

Tonight I am on a Greyhound bus heading to Phoenix to pick up a car from my brother. The trip there will take 8.5 hrs. The trip back in the car might be 5 hrs. (I drive fast.)

It is an interesting contrast between RTC and Greyhound.
Public transit has a wide variety of commuters. Most have a purpose to their trek. Work and school top the bill.

The people are diverse. All ages, all ethnic groups, all classes except maybe the richest, all abilities.

Greyhound seems poorer. People look more worn. Greyhound is that form of transportation that people take as a last resort. Yeah, I know people sometimes take the bus for vacation. I've even done. Our first trip to Vegas was on this same route. We came away swearing never again. It seemed romantic until we landed at the bus station downtown. Between the fascist searches and the crazy people (including, we heard, a knifing nearby) the whole experience went from romantic dream to nightmare fairly quickly.

Now I know to catch the bus in Henderson. Way less trouble on every level.

The bus out of Vegas is probably filled with people who didn't make it here. Las Vegas can be a bad dream for a lot of people because it has often held more promise than it can deliver.

For me both experiences have an added layer. I need assistive devices to walk and I take up more space than the average adult.

7p. Rushing to catch the Henderson Express. I just barely make it to the stop to get on the bus. The HDX is one of the new "green" buses that run on hybrid fuel & electricity. This is the easiest ride for me. The bus is designed for easy use for scooters & chairs.

7:30p get off at the Lake Mead stop in Henderson. I have to back track Boulder Hwy to the convenience store where the bus comes. I end up on a walking/biking trail that parallels the hwy. Nice riding surface but it is dark. I'm thinking I really need to consider a headlight for my scooter. The trees and bushes that line the trail cast shadows that make the trip a little spooky.

7:40p. Will call ticket goes off without a hitch. Watched some teenage boys play hacky sack and discuss superpowers and science fiction and how cool it would be if science really worked that way. The convenience store is on a hill with a great view of the valley, including the strip and downtown. One of my favorite things about Vegas is the views. Day or night there is always something grand in sight.

8:20p northbound bus stops. Two of the teenagers get on board. The other 3 say good byes and then head down the trail. I can still hear them discussing Area 51 until their voices fade into the dark. Now it is just me and a grandmother heading back to Arkansas after a visit with the grandkids. She smokes a cigarette and talks about how worn her little ones made her. I think she's close to my age but most people would think we're from different cohorts. Smoking ages the face.

My mind wanders while she talks and coughs. The Latino couple who run the store have an Audi and a Mercedes parked in the lot. I know its theirs because they transferred stuff from store to cars earlier. I wonder about the store. Is it that lucrative? Do they own more? Henderson is filled with people living beyond their means. Status symbols.

8:40p. The bus is right on time. The driver was expecting a disabled passenger. I help him take the scooter apart & put in the compartment. Getting on bus is hard. He saved me a seat up front. No leg room but that's okay. I'm happy things go well without too much fuss.
10:10p. Laughlin & Arizona. Actually slept between Searchlight & Laughlin. Broke open trail mix. We stop in Bullhead AZ where bus drama ensues. Small towns often have no place to buy a ticket. Passenger has credit card and cash but not enough cash for ticket. After much ado the driver takes what he has & lets him ride. The smokers are happy. The argument gave them a chance for a second cig. I remember when buses were smoke filled. I usually smoked the entire trip. Today I'm grateful for the relatively clean air. The old man across from me took the opportunity to rub his feet with lotion. I try not to stare but I think he knows I noticed. Jonathan Richman's "You're Crazy for Taking the Bus" starts playing in my head. Would they kick me off if I played it?



I discover plugs on the walls. I feel smart that I brought my charger.
A young woman sits behind me. She tells the woman next to her about travels. She started in Florida. Went to Indiana then headed west. She joined a carnival in Utah & traveled with them all over the west. Then she found out she was pregnant. She's going back home to have the baby. That is a bus story. I love those travel tales.

11:14p Kingman Arizona. Route 66 fame. This is a long stop but I don't want to bother.

Definitely cooler here. Kingman is about 1500 feet higher than Vegas.
Accomplishment of the stop. I figure out how to make the seat upright.
I'm feeling the night. I'm ready to snooze.

Bus is filled with the smell of stale cigarette smoke, french fries and coffee. Kingman stop is next to McDonalds. These people are braver than me. It's 2.5 hrs to next stop. Am I the only one who has to pace intake for fear of output?

Two rows back a woman is telling a stranger that after 6 years she is running away from a man who beats her. Like I said earlier, the greyhound is the transport of last resorts, a place of transition. People are going somewhere physically and metaphorically. I guess that makes it a place of hope as well.

I make a note to myself that $3.33 is the best price for gas in Kingman. 20 cents cheaper than Vegas. I'm reminded of something Carl said earlier this evening, "Let's not complain about gas prices anymore." We are grateful to have a car. Tonight I'm grateful that the drama of late isn't like the drama I'm hearing on the bus. We are surviving and may even be on the verge of thriving.

I watch spy mysteries a lot. I know that Carl wonders, some times out loud, what I see in shows like MI5 and 24. I had an insight about this the other day. It is because that is how my life feels at times. Bombarded by one unexpected thing after another, Carl and I find our way around it, thru it. We survive. Sometimes it's exhausting and it takes its toll but we pull through. I remember one character on MI5 remarked after her husband was killed by bad guys trying to extract information from her that she knew she was going to be okay and that is what scared her. Survival can become a way of life. This is why I don't really panic often. Crisis is business as usual.

Oh yeah. Late night bus rides also inspire deep and heavy thoughts.

12:34a I fell asleep for about 45 mins. Woke up to a chorus of snoring. I was probably the alto. My mouth is dry. I pulled out trail mix. It helps.
Flagstaff is about 9000 ft high. Last time I was there they had snow drifts. My ears are popping as we climb I-40. More to say but can't keep eyes open.

2:05a Flagstaff
I switch seats now that the bus is thinning out. I woke up feeling like my legs were on fire but a little walking made it better.
That's the other problem for me with bus travel. Pain. But that is just something to work thru.

My brain is foggy. I hope I sleep the rest of the way.

5:00a. Phoenix.
I managed to dose most of the last leg of the trip. Going on I17 from Flagstaff to phoenix

6a had breakfast with Steve at Denny's. We shared bus stories. There are always stories. Even overheard our waitress telling another employee about her 30 hour trip.

7a. Ready to hit the road back to Vegas. Stopped at the QuikTrip for my Rooster Booster energy drink. I'm heading back.

9:45a
I'm in Wickenberg trying to get my legs to stop cramping so I can drive. I took a nap, ate a banana and drank some powerade. They still hurt. This is the longest I've had a day time spell. I'm afraid to go on but obviously staying here isn't really helping.

11:30 Wikieup
Sitting in the shade of a Joshua tree reflecting on what just happened in the ladies room of the Wikieup Trading Depot. My legs have been cramping bad. I stopped to give them rest. In washroom a woman asked me if I was having a good day I think because she sensed I was not. I told her about my pain & frustration. She asked if she could pray for me. I thought she meant privately. I said "I never say no when someone wants to send a prayer for me." At this point she lays hands on me & prays that my legs would be healed & that I have a safe journey. Another woman enters the room. A stranger to both me and my angel and she lays hands on me as well. There I am in the middle of the desert with two strangers (Carrie & Myrna) offering a prayer for little old Dharma bum me. I cried. This is one of my better road moments.

Oh and my legs do feel a little bit better. But my spirit was lifted no matter what the physical outcome.

12:34p noting the time because I'm back on I40 going full circle in almost exactly 12 hrs.

1:30p legs are doing much better. Didn't stop in Kingman. Stopped @ the last gas station in AZ before the dam. I'm about an hour from home. Still encountering nice people. Clerk in store was chatty & let me go to washroom without buying something first in spite of signs everywhere. Relieved. Homeward bound.

230p. Home.
Postscript: I thought about bringing my still camera on the trip and decided against. Of course this meant I missed some incredible pix including a herd of llamas in an urban neighborhood in Phoenix, about 25 hot air balloons on the eastern horizon at sunrise and about 15 people flying through the air on parachutes attached to something that looked like go carts.

Sent on the Sprint® Now Network from my BlackBerry®

We have a new joint blog on Psychology Today, examining coupling issues in the context of chronic illness. Today is our first entry. It is also our 19th wedding anniversary

Who Gets to Be Sick Today?

Today I begin my 55th year on this planet. It will be a landmark year next birthday--that magical one where discounts and offers put me in a new marketing category. I have one more year of being middle-aged. Somehow, magically, one year from today, I will be transformed into an "early senior" as I've heard it described. Aging, as you can guess is on my mind today.

The last 4 years of my life have been transformative. I swear my biological clock said, you're 50 and now you break down. I take more medicines and supplements than I care to admit. I monitor my health in ways I never imagined. There are times when the hormones in my body render it alien to me. I keep thinking about how when you go through puberty the powers that be kindly offered classes and films to explain what to expect from a changing body. No such manuals and warnings have been easily available on the other end of the hormonal growth cycle. One of those "dropped threads" that it would be nice if it were more a part of our culture.

I've also been thinking a lot about size acceptance this week. Not that too many weeks go by that I don't think about that. After all, I live in a fat body and it is hard to escape that fact in day-to-day interactions. But this week I'm working on several projects that have brought ideas to the forefront. I've participated in some lively discussions. I've been editing a book that addresses some fundamental sociological questions on the topic. I've been planning a project for PDANation.

This week (July 26) marked the 21st anniversary of the Americans with Disabilities Act (ADA) and I've read several things online about questions of accessibility. I always think about such questions around this time because of the anniversary. Last summer I was working on an article about this time, so it was way more prominent in my mind than this year.

The thing is that aging, size acceptance and disabilities have a lot in common. These categories are not front and center in our culture. They often go against the grain of the young, thin and able-bodied goals presented to us for consumption through anti-aging, weight-loss and fitness advertising that fills our daily lives.

These categories have something else in common: in a world designed with a particular kind of human being in mind, just moving around in space becomes problematic. Social geographers have noted that space is designed from cultural contexts. Certain assumptions are made before the design is even thought about and when the design of something is commissioned, some of the parameters are already set by culture and may not even be marked specifically. Assumptions are just made. People just know.

This is why Universal Design is so important. It questions these assumptions and pushes for more inclusive design. It goes to the heart of the matter and does so without dividing people up into categories. It makes the world work for everyone.

So this is my birthday wish: It is my hope that as the designers, engineers and architects of the world seek to create new things, they will be inclusive. This means that they will talk to a wide variety of people about what they need to make their lives work. It means that a wide variety of people will have a chance to be designers, engineers and architects of our spaces. It also means that the principals of universal design will become commonplace in our thinking, our building codes and our lives. That is my hope.

I really hope this is the start of something good. The airlines have been given too much power and have resisted the simplest ideas to make them comfortable for all people. I'm happy to see some understanding that the issue for people of size is part of the greater issue of people having rights when they fly.