Monday, June 18, 2012

Review of "Push Girls"

Mommy strikes again...
Review of "Push Girls"
Some of my Disabled friends and acquaintances who are disability scholars and activists were prepared to love the new reality series on Sundance Channel, "Push Girls." I was prepared to hate it. This is a critical review of the first three episodes, delayed since Gavin and I  recently moved and have been without cable and internet for several weeks.
Let's begin with why I was prepared to hate the show. First, it's a reality show about women; I expected similarities to the "Real Housewives of..." series' or "Jersey Shore." It's annoying enough to see able-bodied women portrayed as shallow ditzes. Second, I am chronically dissatisfied with the representation of Disabled people in the media. We're usually either pitiful in need of charity ("Extreme Makeover," anyone?) or heroic and inspiring (most typically for achieving feats squarely in the normal range of human functioning). I expected no less of a combination of these polar roles from "Push Girls." The final reason I was prepared to hate the show is because I didn't create or script it. I'm serious. One of my greatest flaws is that I get caught up in my own perspective and fail to recognize as valid the viewpoints of others, especially around disability. 

When I learned that the cast of "Push Girls" would be women with paralysis, I was not surprised. Spinal Cord Injury (SCI) is in many ways the most "acceptable" disability. It is more easily understood (not by any means well understood, mind you) by able-bodied folk, and they also understand that it could happen to them. Those with low level injuries can look pretty "normal," just sitting in a wheelchair. Women with SCI in particular are often viewed as attractive by conventional standards; muscle atrophy is perfectly consistent with the uber-thin ideal for women in today's society. Outsiders understand that SCI is not genetic, and won't be passed on to offspring. I'm not saying people with SCI have it "easier," and I'm not trying to be inflammatory; these are just my observations.  

It was neat to see real people in wheelchairs on the show. I forgot how seldom I actually see us on TV. I was turned off a bit initially by the intro; the idea that Disabled people can and should "push through" their disabilities, as if confidence can overcome all obstacles. This theme is repeated often. The women of "Push Girls" don't let their disabilities stop them or their wheelchairs define them. The implication is that if other Disabled people could simply harness some of that attitude, we'd all be happy and successful (never mind actual architectural, attitudinal, and environmental barriers).

I was really pleased to see a diverse group of women; various races, ethnicities, and sexual orientations were portrayed. This was really a pleasant surprise. Too often when we do see disability portrayed, it's through a white, heterosexual lens. I did not care for the voyeuristic aspects of the show. Some of that is inherent in a reality show, but did we really need to see the women getting in and out of the tub? That seems to be for the curiosity of an able-bodied audience. Another way the show panders to such curiosity is the constant re-telling of the women's injuries with very theatrical clips and narratives.

I loved the emphasis on mentorship, with the youngest cast member, Chelsie, being taken under the wing of the older Disabled women. Of course, I was offended when Mia says "I don't date guys in chairs; I prefer able bodied men." I guess it's good they don't apply the same logic to her – but the bottom line is, that's her opinion, and she's entitled to it. Not only that, but it's a realistic demonstration of the internalized oppression of Disabled people.

I really liked the realistic portrayal of financial struggle with health care in the storyline of  Angela. Naturally, it was sensationalized and over-dramatized, but finally! A real issue that Disabled people face every day. An environmental barrier exists! I also liked that there was an aspect that focused on others' difficulty with acceptance of disability (Mia's mom). Instead of portraying the women as struggling to accept their disabilities, it showed an able-bodied person unwilling to accept her daughter as is. Nice (as in, realistic).
I enjoyed Angela's celebration of life party. This gave off more of a disability pride vibe to me, and less of a pity party vibe, although it was somewhat of a mix. Overall, I thought the show was more positive than negative. I found the cast highly likeable, especially Auti. I have come to appreciate hearing Disabled voices; even if I don't agree with them all the time, I'd rather have our voices telling our stories than an able-bodied slant. But don't think I don't know the editing room is full of non-disabled folks trying to get ratings. And drama and pity will get ratings.

It remains to be seen what, if any, impact "Push Girls" will have. But it's a start.


Tuesday, May 1, 2012

BADD 2012: Parenting Rights

Blogging Against Disablism Day is May 1, 2012.   

Blogging against disablism, ableism and disability discrimination.

No surprise that Gavin's mom will address discrimination in one of life's major roles: parenting. It was almost 3 years ago when I saw a story on about an amputee mother that infuriated me.  The following was the response I sent to CNN:

I want to provide some feedback on an article/video on called "Kids care for mom without arms, legs" about Lisa Strong. I am very disappointed about the way that CNN has covered this story. The set of circumstances surrounding this woman's situation are certainly unique and from the video, Ms. Strong appears to be just one of the millions of us in the United States with disabilities that lead full lives. But it's just that - while Ms. Strong has clearly achieved a great deal since her amputations: walking while utilizing prosthetics, parenting two children, adjusting to her changed body while still attending her children's dance recitals and soccer games - the focus of the CNN piece is all about what she can't do, and portrays her children as having to parent her because they assist her with certain tasks of daily living.

In the video, Ms. Strong and her children are doing most tasks, such as cooking, together. Despite claims in the article, I don't see in the video that the children are acting in a parental role (teaching, providing for, and nurturing offspring physically, financially, and emotionally). I was left wondering if some of the chores that the children described doing (helping to cook and clean, taking out the dog, etc.) would have seemed out of the ordinary if their mother didn't have a disability.

The reason this negative and unfortunate focus is especially problematic is that it is a common stereotype (and misconception) that people with disabilities (especially women) use their children as caretakers, and that these children are "robbed of their childhoods" as a result. This prejudice is evident in court cases where able-bodied parents receive custodial preference due to the assumption that a parent with a disability is a lesser caretaker or that the children will be burdened (Breeden, Olkin, & Taube, 2008), and in adoption cases where potential parents with disabilities are passed over due to often erroneous conclusions that they will not be fit parents. People with disabilities have a history in this country of involuntary sterilization partly due to this prejudice. The overly dramatic and stereotypical CNN piece infuriated me both as a woman with a disability and as a psychologist who is aware of the psychological and social impact of media portrayal of diverse and oppressed groups. When an article or video like this is distributed by a network like CNN, it only serves to confirm negative and harmful beliefs about a group of people. Current scientific evidence indicates that parents with and without disabilities and their families are more alike than different (Olkin et al., 2006). Unquestionably, there is more research to be done.

I applaud CNN for its efforts to provide coverage about diversity in our country, for example through the Black and Latino in America series. I would encourage CNN to do their homework and afford fair, unbiased and real coverage of the lives of people with disabilities in this country. The major obstacle in living with a disability is not disability. Rather, it is the stereotypical and inaccurate portrayals of disability in the media - showing us as either helpless and pitiful, or superhuman and inspirational. Neither of these extremes shows the real face of life with a disability, and both dehumanize and oppress people with disabilities. I look forward to the day when people with disabilities can expect from reputable media a balanced and accurate look at people like themselves, and I believe it will go a long way toward equality in the United States.


Breeden, C., Olkin, R., & Taube, D.J. (2008). Child custody evaluations when one divorcing parent has a physical disability. Rehabilitation Psychology, 54(3). 445-455.

Olkin, R., Abrams, K., Preston, P., & Kirshbaum, M. (2006). Comparison of parents with and without disabilities raising teens: Information from the NHIS and two national surveys. Rehabilitation Psychology, 51(1). 43-49.

That was in 2009, when I was not a parent; when I had no idea my beautiful son Gavin would be born just over 2 years later. As a side note, I never received a response from CNN. Becoming a mother has only strengthened my beliefs about parenting rights and social justice for disabled people, but it has also deepened into a dark fear. In my nightmares, I think about what would happen if someone tried to take my son away from me. Would I stand a chance in a custody battle? What if a court decided an able-bodied person could raise him better? No amount of intellectualizing can erase this primal fear. I'm a white, professional, socioeconomically advantaged woman with a doctoral degree. I'm highly independent and have been very privileged. And I am vulnerable, because just looking at me, others aren't sure how I can take care of a child by myself. I know disabled parents who have lost custody to the other parent due to their disability.

The reality is, parents with disabilities experience discrimination every day, from the subtle microaggressions which accumulate over time to the overt exclusions and oppression which marginalizes us. Even before we become parents we are discriminated against - people with disabilities are viewed as less attractive reproductive partners, and are specifically avoided as romantic and sexual participants due to our disabilities. Genetic testing is heralded as the best way to avoid... more people like us. Our people are sterilized, encouraged to get abortions, and told to give up children for adoption. When we raise our children, others assume the parent with the disability assumes a lesser role; people figure the kids have to fend for themselves, or parent the parent, like in the article above. Or, we are classified as a "super-parent" and everything we do with our children is amazing because we're disabled. Polarized attitudes - equally harmful.

This area needs more attention, on a professional and personal level. I'm organizing a telephone workshop for psychologists this summer about sexual and reproductive rights for women with disabilities. Accessibility is important, but attitudinal change is essential. Here are a couple resources for parenting rights for disabled people already in existence:

Center for Rights of Parents with Disabilities

Through the Looking Glass

We need to come together - although our disabilities may be different, our human rights are the same. Parenting solutions will vary; the amount and type of assistance required are different for each of us. But as disabled people, we all have something to offer our kids - our children need us, and their lives are richer because of us. No one should ever be denied his or her role as a parent based on disability discrimination.

Friday, April 20, 2012


(Special guest entry by mommy)

Staring. I've dealt with people staring at me my entire life. Ever since I can remember, people would stare, surprised that I don't have any legs and only have one arm. I've always just ignored it, or tried to ward off pesky starers by staring back, or saying something "clever."

Adults and children both stare. Most adults stop staring relatively quickly or try to stare when they don't think you can see them staring. Kids stare and keep staring. And then some of them make comments. Loud ones. Like, "mommy, that girl doesn't have any legs!" It's been a really downer since it's become, "what happened to that lady's arm?" I much preferred being that girl. Anyone who knows me is aware that I'm a very confident person. I don't make any attempts to hide my disability. I don't wear prosthetics; I do wear short sleeves.  And I'm a pro at ignoring adult staring.

It turns out kid staring is another animal. I don't remember it being so different when I was a kid, but I think I was mostly around other kids who were familiar with me, such as classmates and 4-H pals. I remember once when our family was on vacation in northern Michigan, my younger sister, who was about 10 year old, told a particularly annoying starer that "nothing is wrong with my sister - there's something wrong with you!" Before I had Gavin, when kids stared and made comments, I tried to smile and engage them, inviting them to make contact and have a positive experience with a person with a disability. Parents are usually really embarrassed by their child, and often try to hush and whisk said child away. Those of us with disabilities have long spoken out that teaching kids avoidance and fear is an early negative message that leads to exclusion and intolerance. Children staring at someone who looks and moves differently is totally natural.

So why does it bother me so much? Why do I feel so uncomfortable being stared at by kids and hearing all the questions and exclamations of surprise? The way adults try to act like they're not staring sounds sneaky, but I'm learning that I actually appreciate it. Even though I think adults stare now more than ever (she has a baby?), at least it's quick and/or subtle. Before Gavin, I was okay with the occasional supermarket kid staring. I could gear myself up for a trip to a child-infested destination like a zoo or an aquarium. At the risk of this being a complete "duh" moment, there are kids everywhere I go with Gavin - the baby store, the pediatrician's office, and most of all, the daycare.

Earlier this week, I was wearing a long sleeve sweater at work (in the freezing hospital). By the time I went to pick up Gavin, it was in the 80s (Thank you, April in Texas) and I was getting hot. I was about to take off my sweater, but then the thought crossed my mind that traipsing into that daycare with an exposed stump was like leading a lamb to slaughter. I could just envision my white arm contrasting with my black tank top - attracting all these busy bees to their flower. I stopped dead in my tracks. Was I seriously trying to keep my arm hidden to detract attention? Yes, I was. Is that wrong?

Maybe it's just that I go in and out of the daycare twice a day, every weekday. I just want it to be smooth and simple. I don't want to take time to educate other people's children and make them feel comfortable around people with disabilities. Frankly, I don't have the time. That sounds really bad. I feel guilty that I'm uncomfortable with children staring at me. I know it's natural, and I know they mean no harm. I wonder how Gavin will learn to handle it, and questions about his mom. I have a feeling he'll teach me a thing or two.

How do other disabled parents feel about staring? How do you handle it? What do your kids do?

Friday, April 6, 2012

The Travel System

When you have a baby, you will find there are complete "travel systems" which include the carseat, base, and a stroller. This is one of endless choices while baby-shopping - to get a travel system or not, and which brand of carseat and stroller you want. The choices are truly mind boggling. To choose a carseat, Mommy told me that she went to Babies R Us while very pregnant and spent a LOT of time trying them out. She needed one that she could use with one hand, and still be light enough to lift with me in it. She thought she wouldn't need a stroller because she figured it would be impossible to push a stroller from her wheelchair. Wrong, mommy!

She ended up choosing the Chicco Keyfit 30 travel system. The choice was based on having the most features that could be used with one hand, and the ability to rest the carseat on the wheelchair armrest (with support). This is not a light carseat, and with me in it, it's darn heavy. But mommy can use all the features (not easy, but possible).
It seemed that lengthening the straps would require two hands. That is, until mommy figured out she can push that front orange button with her thumb, and reach underneath with the rest of her hand to pull the straps from the bottom. Here's a video to illustrate:

Here are some photos of mommy getting me out of our van in my carseat from the base onto the wheelchair armrest:

Here is the stroller that came with the travel system. It works great, but it's really big!
Mommy found this one which my carseat snaps right into and it's much more compact!
Notice how the handle is one piece instead of two. Here we are in the stroller:
 (Mommy is very serious about shopping at Target)
Here is how mommy pushes my stroller from her chair.

All in all, we are very happy with this system (Of course, it's the only one we've used). Happy Travels!

Sunday, March 25, 2012

Baby Carriers

Gavin here. Babywearing is all the rage! Mommy thought putting me in a sling or carrier would be just the ticket for a one-armed lady like her. Mommy was (again!) wrong, but here's a little about our adventure with slings and carriers. And what an adventure it has been...

First, we tried the Moby wrap. It just looked so awesome and all those videos we watched on YouTube made it look so easy! In reality, it is a very long piece of fabric which requires wrapping and tying and in the end it was hot (people with multiple amputations tend to get hot easily), and mommy needed a lot of help to get it on, and I fussed the entire time I was in it. Luckily we were able to pass it on to a two-handed new mommy who really loves it.

Next, we tried the sling route. We have two: the Balboa Baby one pictured above and a non-adjustable one passed down from another disabled momma & friend (although it hadn't worked for her). Slings are easy to get on and off with one hand, and mommy likes them. I like them for 10-12 minutes. And then I don't. Mommy kept trying different positions, and for a while she thought me sitting up, butt in sling, facing her, would work. Not for long!
Next, we tried the Baby Bjorn. We have just the original but they have fancier versions. Now, you might not know there is all sorts of controversy about these carriers. A lot of the mamas online rail against the Bjorn because it's hard on the wearer's back (Other carriers distribute the weight onto the wearer's hips, and this Bjorn does not). Mommy has found this to be true. It is hard on her back after a while, especially as I get heavier! You may also hear that the Bjorn is a "crotch dangler," and could cause hip dysplasia. Unfortunately this is based more on opinion than actual science, but it does make some sense. Probably only a concern if baby was in it several hours every day, and I have seen an orthopedic surgeon's wife wearing one, but still... Anyway, one thing we love about the Baby Bjorn is that mommy can put it on, and get me in and out totally by herself. The way it fastens and unfastens is great for someone with one arm. I like sitting in it, mostly in the outward facing position (also controversial!), but I still won't tolerate more than 30-45 minutes in there.

In the Bjorn (in my bear suit!) on a windy TX day

After hearing about all the Bjorn controversy, mommy wanted to try something else. She ordered the Mei Tai BabyHawk. What a beautiful carrier! But she didn't read closely enough because it wasn't until it arrived that she realized it tied on, and tying anything behind her back is a no-go, especially with me up front squirming! She sent that one back right away. It was really pretty, though.

Next up, we ordered the Beco Gemini. We chose this one based on great reviews online, and style (of course - I'm a very stylish baby). It was the only ergonomic, non crotch dangler that offered outward facing (google that controversy if you really want to know) positioning. Other contenders were the Ergo, Beco Butterfly, and Boba (all get great reviews), but none of these allow baby to face outward. The Beco Gemini can also be worn on the back, but that seems unrealistic from a wheelchair! Once it arrived, mommy eagerly unwrapped it and prepared to put it on (who needs instructions, right?). But she couldn't get any of the buckles undone. So weird! After she read the instructions, she realized these were special safety buckles which take TWO hands to release! Really? Really???  Even though she believed this would not work, she put it on (with help) anyway to see how it felt. She said it was so much more comfortable than any other carrier! All of my weight distributed on her hips instead of her back! Nice! I liked it fine - same as the Bjorn - I'll tolerate 30-45 minutes in it. We eventually found a work-around to the buckle issue - mommy can buckle the carrier all up, loosen all the straps all the way, and slide it on over her head. Then she partially tightens the straps, slips me in from the top, then fully tightens all the straps. Not so easily accomplished when I'm crying or fussy! We are working on this one handed technique for undoing the buckles, too.

Mommy is currently too tired and too broke to try any more of these baby carriers (they'll run you $50-$200 new). But, should she get a second wind, she'd like to try the Baby K'Tan, which is like the Moby wrap but simpler.

Overall, I would rate the Beco Gemini as the best carrier we've tried, but it has unique challenges for those with one hand. The bottom line is that I don't love any carriers or slings. What I love is to be held "old school." Sorry mommy, your one arm is mine!

Thursday, March 15, 2012

Crib with a Door

I've had a request to blog about the crib we have. I say have, rather than use, because we haven't yet gotten much of a chance to use the crib just yet. I've napped in it a couple times, but I still sleep in the co-sleeper at night in mommy's room. The crib brand is "Babee Tenda" (I know, right?), and the feature that is so great for wheelchair users is the door in the side. It's not the same as a drop-side, but an actual door. At first mommy thought it might seem like a dog kennel, but it doesn't. It's supposed to convert to a toddler bed.

This crib is still tough to use with one hand (mommy has to unlatch the top and bottom separately and it would be easier to do them both at once). The crib sits pretty low, so mommy has to lower the seat of her power wheelchair to get me in and out. I'm guessing I can get her to actually crawl in with me and tuck me in! It stinks that this is the only crib like this on the market because it's severely overpriced! Check for occasional price drops and craigslist (just don't get murdered, please).

 It does clean up pretty nice:
 (Don't worry, the bumper's just for show. It's mesh, but mommy will take it out before I sleep in there)

Wednesday, March 14, 2012


Nursing is my favorite activity, hands down! Speaking of hands, the fact that mommy only has one presents certain challenges during breastfeeding. Mommy would encourage others who are able and interested to breastfeed - it sure beats fixing a bottle in the middle of the night! We've been using several products to assist us. First, we use the Arm's Reach Co-Sleeper (mini). This makes it so mommy can reach me easily at night, but not share her bed with me (although, many times I have managed to weasel my way into the big bed)! Generally this has been a good product, but we've had trouble finding sheets for it, and it doesn't fold/unfold as easily as we'd like, so we've mostly just left it set up in the bedroom.

Another big help for feeding has been nursing pillows! That's right - plural. We use two different types of pillows. Mainly at home, we use the ever-popular Boppy. It's great on the couch or in an armchair. It works in the wheelchair only if there is a table in front of us. We need an additional pillow to put under which ever side we're on, though, because it's meant to go on a lap, and well, technically, we don't have a lap! We keep other pillow in the car - it's called My Brest Friend (I know, right?). This is a much firmer pillow that actually straps around mommy's back and has back support. The one we have has a buckle, and I wonder if the one pictured here with velcro would be simpler... uh, faster (when I'm hungry, I'm hungry)! Anyway, it's great for nursing in the back seat of the car (which happens more than mommy cares to admit). And it's ideal to use from a wheelchair. These pillows are essential to prevent mommy's one arm from getting very tired and numb from holding a heavy baby.

Finally, there's breast pumping. Mommy pumps milk every day at work so I have bottles ready for the next day. We use the Medela Pump in Style (thanks, Aunt Bridget!). The pump and supplies are pretty standard, but mommy found the need for a hands-free mechanism to be essential! Soooo, she has to wear the silliest contraption EVER! Makes her look like a dairy cow/clown. But it gets the job done. Now, if that janitor at the hospital would just figure out that "session in progress" could mean a breast pumping session!!!
Probably the toughest thing has been working on mommy's coordination to stay covered up in public. Personally, I prefer to nurse without a cover in all locations across America, so whenever possible I squirm and thrash to try to reveal those beautiful fountains to the entire world!

Welcome to our blog!

Hello and welcome to our blog! I'm Gavin, and today I turned 4 months old. Mommy and I decided to start this blog to talk about parenting with a disability, inspired mostly by the amount of GEAR I require! You see, mommy didn't know much about what babies need to begin with, and every disability is different, so what works for other mommies with disabilities didn't necessarily work for her.  So we figured it could be helpful to write about our experiences. Let us know what you think!