Tag Archives: adaptive equipment

Traveling with Wheels: Amtrak to Atlanta & back

*This post is delayed because my computer & WordPress haven’t been cooperating…I have a couple photos of my scooter on the Amtrak train, but I can’t manage to get them to post. I apologize in advance!

I got back on a Monday from the amazing Society for Disability Studies annual conference that was held in Atlanta, Georgia, USA from June 10-14 (I’m going to blog about that separately). The last time I was there was in 2011 for the National Women’s Studies Association conference, but I drove to the conference instead of flying or taking the train (I was also a cane user at that point). While that was a lovely six hour drive to Georgia, it was a really frustrating 10 hours back because of a huge traffic jam. Since my pain issues are much worse than in 2011, I knew that driving would mean I have to take at least hourly breaks and that was something I really didn’t want to deal with (plus the price of parking at the conference hotel ate the money I saved from driving).

I was a little nervous taking this trek. It was my second trip on Amtrak and my first alone. I also didn’t designate myself as disabled on the ticket because I was afraid that I wouldn’t get an actual seat to sit in for the trip (the thought of spending 8 hours sitting on my TravelScoot was really unpleasant). The Amtrak employees at my local station were great. They directed me to the elevator to get to the tracks, then asked me if I wanted to use the ramp or go up the stairs. Since I wasn’t sure what the ramp looked like in action, I opted to use the stairs and have them lift my TravelScoot up and over the stairs (they were amazed at how light my scooter is!). They pushed it to a disabled section and I got to sit with my beloved scoot in front of me with an empty seat next to me! I was really thankful because the train seats are probably one step above metal folding chairs in comfort for me. I was able to find new and unique ways to drape myself over seats & scooter throughout the trip (although I never managed what could be construed as “good sleep”).

I started my journey at about 1am and arrived in Atlanta shortly before 9am. The ATL Amtrak station is a lot smaller than my local one, which was a huge shock. I got myself through the people and was ecstatic when I found the restroom (the bathroom on the train was right by my seat and reeked of urine). Much like in an airport, I had to wait for a presumably non-disabled person to get out of the accessible stall (I honestly don’t blame people for wanting enough space for their body & their luggage in the stall, but that’s a design issue)….however, I had a young woman almost shove me over as I headed toward the accessible stall when it opened! Thankfully she realized what happened, asked if I was waiting for the stall (“yes”…with a barely hidden eyeroll thanks to exhaustion), then let me go use it.

*****

The trip back started out way too eventfully for my tastes. I spent Sunday hanging out with awesome friends I had either met from previous conferences (like Bethany from Crip Confessions) or from Facebook. It was glorious on so many levels, but more mechanically it meant that I got a ride to the train station so I didn’t have to mess with public transit. One of my friends was taking the same train (but to NYC), so it was pretty convenient….but we were running late. We were trying to find what my friend called a “Red Cap,” which is one of the disability services type employee (I think in NYC they actually wear red hats to be visible to folks that need boarding assistance…I didn’t see any at my home station, so it could be a large station thing).

Every employee we found seemed confused by the “red cap” question, which really didn’t help the sense of panic we both had about being potentially late for our train. My friend would then essentially ask for a disability liaison (I can’t remember her exact phrasing), which would get the employee to look at her ticket & nod, but look at my ticket and chastise me for not having my ticket labeled as disabled. At least four different employees made comment about it in a way that made me freak out that they weren’t going to let me board the train because my ticket didn’t have the designation. In the midst of it all, I got separated from my suitcase, which made me panic even more (the porter took it and my NYC friend kept an eye on it). Eventually I did get to board the train with my scooter and with text messages & periodically asking the Amtrak employees to keep an eye out for my suitcase, I was reunited with the rest of my belongings. I feel lucky that I didn’t hit full blown panic attack (something I haven’t had for over a decade, thankfully), but I’m still upset that the employees made me think that they were going to leave me stranded in Atlanta at all!

Although the train got a late start, it made up for it along the way and I got back to my home station at about 4:30 in the morning (less than an hour late). I confirmed that I cannot get much sleep on a train, which was a big frustration as I had to work at 9am which made for a very long day. Thankfully my husband is a night owl so it wasn’t too much of a hassle to get me home!

Next posts: the Society for Disability Studies conference in Atlanta, Flying with Wheels: TravelScoot edition, and probably a CONvergence post, plus more!

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Scooting at the gym

Summers can be weird for me from a physical activity standpoint. The campus rec center¬†only lets Summer semester students use the facility, so in a sense I’m “gym homeless” for a few months. Unfortunately, this is also driven by my reduced pay rate in the summer at my assistantship. Thankfully my husband has a black card membership at Planet Fitness that allows him to bring a guest with him, which also means that he has more incentive to actually use his membership.

My TravelScoot has been the magic that has made getting to the campus rec center possible, with the added benefit of not needing to worry if I work out so hard that my legs aren’t functioning well enough to walk. I was a bit nervous using it at Planet Fitness though…probably a combination of thinking “the parking lot isn’t that far from the door, so I should be able to walk that distance” and partially from the painful visibility of being a Scooter Fatty in a space that’s marketed for body transformations (PF has partnered with the awful “reality” TV show The Biggest Loser, which is one reason why I don’t have my own membership there anymore).

My scooter next to a recumbent bike at Planet Fitness
My scooter next to a recumbent bike at Planet Fitness

As a part of my Access Fitness project, I needed to get a real idea of what the facility looks like from a seated viewpoint, so I used it to jump my ever-present shyness hurdle. The picture to the left shows the row of recumbent bikes with a gap in between where my TravelScoot sits as well as glimpses of the signature yellow and purple strength training machines in the background. I was initially really giddy about there being a space between bikes that a wheeler could park their device, but realized that it’s there because of a large pole that would block a person’s view of the TVs that are mounted to the ceiling. Accidental accessibility…well, it worked out.

I haven’t gotten any comments from other gym goers about the scooter, but I have had some interesting looks. Some people look really confused when I zip over to a recumbent bike and get on (although I think most people subconsciously realize that a lot of scooter users can stand and walk a little…I would expect this reaction to be more blatant with my manual wheelchair because people freak out a bit seeing me stand with that). I’ve had a few people give me weird looks during my ride as I keep a decent cadence (usually 70-80bpm for fellow fitness geeks, but that depends on what I’m listening to or if I’m talking to my husband while we bike). At the end of my ride, no one looks at me quizzically since I’m usually holding the bike white-knuckled when I get off the bike and I usually manage to trip on either my feet or the floor trying to get to the scooter (this is why I usually wear fitted pants or leggings to the gym…I really don’t need extra fabric either tripping me since I’m short or catching on any part of the bike as I try to dismount!).

I have to admit that the scooter has been giving me license to go too hard, which is something I’ve always struggled with (I still remember my MMA instructor telling me that I only had two modes, on or off, and my Crossfit instructors probably would have said the same thing). The other night my husband decided that he needed to match my time, program selected, and level (60 minutes, random hill, level 5-7), which left him drained and walking slowly…I didn’t have to worry about using my legs to get to the car plus my endurance is pretty good, but I should have been worrying about how I was going to get up the stairs to my second floor apartment. Not my smartest move, but there’s something that I find satisfying about peeling off a sweat soaked shirt & bra…tangible signs that I busted my ass in the gym and enjoyed it! It’s a little difficult to get out of my sweaty leggings when I’ve fried out my nerves, but I don’t think my husband minds helping me in that regard ūüôā

More fitness adventures await!

Pre-race photo before my first 5k on wheels
Pre-race photo before my first 5k on wheels

*I do not get paid by TravelScoot to endorse their product. I am just a huge fan of this amazing company that puts out a product that has had a huge positive impact on my life. However, I do receive a small referral payment if someone mentions my name when they buy a TravelScoot from the company.

When adaptive equipment breaks

Carpet in the background with a mobility scooter in the foreground along with part of a blue pants-wearing leg
My TravelScoot parked next to the bike I’m on

No lies, I’m bummed. I’ve been scooterless for a week now. Last Monday, we did my usual pre-class routine: my husband pulled the TravelScoot out of the car and I walked it down the driveway (the driveway is gravel and it hurts more to drive it down than to walk it)…to find that it wouldn’t turn on. No battery lights, no throttle, nothing. An electrician friend took a look at it, found a loose wire, but that wasn’t it. It looks like it might be the battery, but it looked like it was charging…

Anyhow, it’s been a long week without the scooter and I’m really feeling the effects of it. I miss being able to “walk” to campus. I miss being able to go to the library. I miss being able to have everything I need/want with me (the max I’m supposed to carry is about 10lbs). ¬†I really miss going to the campus gym. ¬†I was working out about four times a week…and now I’m down to none because I can’t get there.

My long days on campus end up being longer yet less useful. Today is my longest day on campus. With the scooter, I would zip to campus (no car!), go to work for a few hours, grab a bite & lay down somewhere for a few minutes if I needed, go to the gym, prep for my night class (sometimes while laying down, depending on how I felt post-gym), go to class, zip home. Today I had to drive to campus, pray for a close & accessible place to park near my office, hobble to office with my bag & crutch, work for a few hours while rotating ice packs because of inflamed nerves, grab a bite and lay down for at least an hour (likely several), then try to work on school stuff while laying down, then drive to the building my class is in (and hope there is parking in front of the building), then night class where I will be up & down & fidgeting & wincing & loopy from medication, then home.

There’s a pretty stark difference between the two. With the scooter, I sometimes have the spoons to go to the dance studio after night class (if I’m really careful in between work & class…and even then I might still end up spending half the class holding on to a wall to not fall). With the scooter, physical activity becomes part of my day because I haven’t pissed off the nerves that were damaged from my broken spine & spondy smashing them for years). With the scooter, my time in between scheduled events becomes more useful and more joyful (lying down with the scooter is a deliberate pacing of daily activity…lying down without it is more of a collapsing into a puddle, trying to not cry/vomit because I’ve walked a block to the nearest couch-like thing on campus).

Hopefully I’ll get my scooter back soon so I can get back to working out, kicking ass, and taking names….because a physically active Casey is a happy Casey ūüôā

Gimpy gym rat reborn!

Ok, so the title might be hyperbolic as I’ve still been active…just not as active as I wanted to be in the ways I found meaningful (it shouldn’t surprise anyone that a person working on a PhD in kinesiology would have a bunch of fitness equipment in their home)…but the scooter has indeed brought me back to being able to hit the gym like I knew it would! ¬†I’ve been using my university’s rec center, which was previously inaccessible because of a giant hill that I couldn’t safely climb with my manual chair and the walk would have angered my cyborg bits.

Not only does it feel awesome that I’m back in a gym, but I’ve been able to see first-hand some changes that were initiated because I commented on some access issues on a comment card. ¬†The notable one is that it would be awesome if they could make sure that a couple of the recumbent bikes had space next to them to park a wheelchair or scooter as many wheelers are able to use their legs (it used to be that the only machine with room was the handcycle). ¬†I zoomed in and was delighted to find a couple bikes that I could park next to!

Carpet in the background with a mobility scooter in the foreground along with part of a blue pants-wearing leg
My TravelScoot parked next to the bike I’m on

It’s not a great photo, but for a spur of the moment shot it does the trick. The photo shows the grey carpet of the Rec as the background with my scooter in the foreground along with a bit of my blue pants to show that I’m sitting on a recumbent bike with my scooter next to me. Huzzah!

When I got on the bike, I completely forgot about the problems I had last time I tried to ride a recumbent bike for a workout because of a combination of my hypermobile joints and my borked spine (this was pre-surgery). ¬†I would be in agony with electric shock sensations down my legs and would get spasms if I went longer than five minutes (which I would do because I really wanted to work out). ¬†I’m actually glad that I forgot so I could be mindful of my body in the here-and-now instead of fretting about what might happen.

I intended to ride for about twenty to thirty minutes…which turned into forty-five minutes. ¬†Once I felt confident that I wasn’t going to have severe issues (meaning I would tolerate an increase in pain and some spasms, but anything that caused verbal outbursts or the desire to cry meant I was done), I was in my element. ¬†My heart started pumping, I started sweating, and I felt awesome. ¬†I think I could have cried from pure joy. ¬†I cranked out about eight miles (Fitocracy has the actual stats recorded) and left the Rec with a gross sweaty t-shirt and a dopey grin on my face.

I’ve been to the Rec several times since that workout and have left happy & sweaty every time. ¬†On top of that, I ran into a classmate at my office who offered to give me free personal training at the gym she works at so she can show off her training skills. ¬†I’ve only had one session with her, but we’re figuring out how to keep me a happy healthy gimpy gym rat. ¬†It’s a bit of an adventure, especially as I’m trying to heal tennis elbow that I got from using my forearm crutch.

Next adventure? ¬†Finding my cute workout clothes…or acquiring new ones (I¬†am in pretty dire need of new sports bras).

Pavement in background with a fat white woman sitting in a manual wheelchair with workout clothes, race number, and flexing one bicep
I’ve done a 5k on wheels without training…

Quickie update

It’s been a heck of a couple weeks, which is why it’s been quiet on this blog. ¬†There will soon be a post on Fierce Freethinking Fatties about my first week using the scooter (affectionately known as my first week as a Scooter Fatty)…let’s just say that once I pushed past my anxiety, it’s been liberating!

Off white wall and medium brown desk in background, small metal scooter with basket in back & crutch balanced on it.
My TravelScoot sitting behind my desk at work on the first full day of using it.

My next immediate hurdle is figuring out how to do appropriate spoon management while teaching so I can get back to dancing more. ¬†A standard classroom technology podium is built for someone that’s over 5’2″ (approximately) and trying to lecture while seated in a classroom with barely movable rows isn’t working, so I’ve been standing & leaning on a rolling chair or other creative stand/sitting hybrids to be able to operate classroom technology. ¬†I could probably fight to get a presentation remote clicker to use, but since I’m considered an adjunct professor I doubt the university would spring for that. ¬†The other thing I’ve figured out is that the scooter is basically unhelpful in a classroom with the way I want to teach. ¬†I’m a kinesiologist and a dancer, so I like to be in pretty constant motion in some manner, and a scooter just doesn’t allow for that. ¬†If I can figure out how to conquer some public speaking fear to be able to teach in front of twenty college freshmen, I can definitely figure this out!

In terms of scholarly stuff in general, I’m severely struggling. ¬†I still have my incomplete courses, but I’ve not made significant headway on my independent study for the semester either. ¬†In all honesty, I’m barely keeping up with the one in-person course I’m in (Autism, Disability Theory, & Philosophy). ¬†A little bit of that is from not having a background in philosophy, and a little more is from some really weird dynamics in the class that have pegged me as the token disabled person. ¬†The rest is just from dealing with my body and what I’m trying to force it to do. ¬†I spend most of my weekends laying in bed trying to recover. ¬†Unfortunately, my cognitive abilities get dumped into the recovery bin as well (chronic pain is tiring on its own, even without the assortment of other bodily oddities I deal with). ¬†I’m honestly scared because of it….I’m trying to put together my committee for my plan of study & comprehensive exams (depending on dissertation, the committee might change), but I don’t want to come across as someone that will be stuck in ABD land (“All But Dissertation”). ¬†One way or another it’ll work itself out.

As for dance, I’m really feeling awful that I haven’t been to a dance class or a troupe rehearsal in a couple months. The combination of my work/class schedule, increasing spine problems, and tight finances have left me with doing some mental rehearsal & occasionally doing FCBD drill videos from YouTube (on my tv with my Xbox 360! ¬†I love technology!). ¬†It’s better than nothing, but I fiercely miss my Helix dance siblings…not only is ATS a primarily group format, but I just don’t enjoy soloing that much (which is why I never became a pro dancer…semi-pro was the best I managed in my whole-spine days). ¬†I’m nervous getting back into the swing of it all because my anxiety disordered brain keeps spinning me tales of angry troupemates and passive aggressive garbage (the latter has happened in a previous troupe…fears with connections to reality are the hardest to overcome).

The scooter arrived just in time…for me to get a flat in one of my manual wheelchair wheels. ¬†Since I’m still going to use the manual chair for smaller things like shopping trips and longer trips like academic conferences (I cannot bring myself to use the scooter at the upcoming Sport Sociology conference…I’m too afraid of being treated poorly and giving a first impression that will keep me from getting a job post-PhD), I’ve decided to check into solid tires that don’t have inner tubes. ¬†They’re a bit heavier and don’t have as good of traction, but will keep me from being stuck in a random city trying to find a bike shop to pump or fix my wheels (which has happened).

In a few days, I’ll post a few OotD posts from Gwynnie Bee. ¬†While I probably shouldn’t be spending money on it, having a guaranteed nice thing to wear once a week that I don’t have to worry about washing/drying/maintaining is absolutely lovely. ¬†It decreases my stress, lets me have a package come in the mail about once a week, and always feels like I’m playing a grownup version of dress-up. ¬†If I could afford upping my subscription, I would! ¬†I could have two outfits a week for teaching in that help me not waste spoons on clothing maintenance and to help me pretend that life isn’t really hard with chronic pain & nerve damage. ¬†Less laundry = less wasted spoons = happier Casey = I win!

Anxiety & Ableism

My partner standing regally behind the assembled TravelScoot
My partner standing regally behind the assembled TravelScoot

The TravelScoot arrived! ¬†Huzzah! ¬†I’m waiting for the seat back and a basket, but it’s really here! ¬†You all helped! The picture on the left shows it put together in my living room with my partner standing behind it with lots of bookshelves (that will be sad looking bookshelves if I ever get a full time professor gig as the at least half of those books will be transplanted).

So what’s with this anxiety thing in the title of this post?

Anxiety about ableism.

Anxiety about weight stigma mixed with ableism.

Internalized crap about my body size.

Internalized crap about my body’s ability.

This seems to be a process I go through with every incarnation of adaptive aid I’ve ever used in this broken spine journey. ¬†I did it with the cane, the crutch, the manual wheelchair. ¬†Part of it is a process of accepting that my body is unfixable with today’s medical technology. ¬†This is hard, especially post-surgery with the fantastic diagnosis of “failed back surgery syndrome” (no shit, that’s what it’s called….it has a more jargon-filled name as well, “post-laminectomy syndrome” but anyone with knowledge of medical terminology knows that that isn’t a particularly useful term). ¬†It’s hard looking at the compromised care I received because of my size and assumptions about what I do or don’t do with my body. ¬†The compromised care I received because of corporate health care telling my surgeon to just get things done as quickly as possible, without thoroughly talking to the patient (because I’m pretty sure that if my surgeon did this, he would have known that I have bilateral nerve damage from the broken & slipped vertebra, not just on the left side). ¬†Rehabilitation narratives are harmful when a person can’t be rehabilitated.

Another part is the constant fight with people that don’t understand that ability is a moving target for many people, not a fixed point in space. ¬†Sometimes that moving target is over a long period of time, whether it’s a downward slide like folks with degenerative disorders like muscular dystrophy or episodic like some forms of multiple sclerosis (MS). ¬†Sometimes that moving target is in the span of a single day. ¬†For me, it’s both (although I really try to only worry about the short term at this point so I can keep my long term worries focused on my PhD). ¬†If I’m careful about how I move my body and take appropriate breaks, I am sometimes rewarded with things like being able to bellydance (which, because of a rotten combination of schedules, money, & body crap, I haven’t been to a class or rehearsal since July). ¬†

That reward is not visible to anyone except for me and my husband and sometimes a few other folks if I chose to communicate that, whether verbal or not. ¬†Sometimes I’m not rewarded at all, and that sucks. ¬†Sometimes I’m able to push through even though I’m not rewarded, although I generally pay the price for days afterward if I make that choice. ¬†Either way, I know that spoon management (time/energy) is the most likely route to being able to do what I love to do with my body.¬†

Even though I know this and can articulate this, I still fight myself. ¬†I’m afraid to use the scooter to go to campus. ¬†I’m afraid of the looks and the comments. ¬†There is so much violence, both verbal and physical, to people with invisible or variable disabilities that I’m afraid. ¬†While the scooter affords me the assumption that I can walk at least a little bit (versus the manual wheelchair that people see as a symbol of paralysis), it also carries the stigma that goes along with the anti-fat rhetoric rolling through society right now. ¬†

While the scooter means I will be able to be more active (both on an exercise/dance/fitness level and a “hey, now I can get around campus and can scoot to school/work” level), I’m confronted with my years and years of trying to be the Good Fatty and the Stereotype Defying Fat Person (mixed with some supercrip because of my congenital disabilities, just for garnish). ¬†I want to yell to the world that hey, now I can actually be able to do meaningful physical activity that will make me a healthier person!!….but there’s an underlying¬†healthism to that as well by saying that I’m somehow better than the scooter fatty that doesn’t want to exercise.* ¬†News flash to my subconscious: there is no moral obligation to be healthy or to attempt to be healthier.

Right now I’m trying to keep up the mantra that using the scooter, especially on days where I work in my office and teach in a building a couple blocks away (which my spine absolutely loathes, on top of trying to stand while teaching), will lead to dancing and working out joyfully. ¬†I just need to ignore the haters and own my existence.

*As a kinesiologist, I totally want people to be more active, but I want that activity to be on their own terms. ¬†Coerced exercise, whether for health, weight loss, etc is counterproductive and harmful to a person’s mental health.

Scooting!

Thank you to everyone that supported my scooter fundraiser, whether that was financially, socially (sharing), or emotionally. ¬†As I’m from a good ol’ American “pull yourself up by your bootstraps” family, it was really hard to even start the thing. ¬†Add to that the frustrating level of ableism and sizeism, both internal and external, and it made me a ball of nerves for a long time. ¬†I’ll start with the TL;DR….it’s on its way, even though we didn’t hit the goal!

Thanks to some awesome networking like Atchka from Fierce Fatties (where I guest blog about once a month), I was able to raise a significant amount of money…but we still weren’t able to get to the amount I needed to get the right scooter from my needs without doing a media push (which I thought about, but with the combination of old health crap, new health crap, a new semester that includes teaching by myself for the first time, there was just no way that I was going to have the spoons to make that happen properly.

The next big thanks to Marilyn Wann (the author of the gateway-to-fat-acceptance book Fat!So?), who knew about my fundraiser to get a scooter to have a better quality of life and to move through the world on my terms. ¬†She heard of someone selling their couple year old TravelScoot so they could upgrade to the deluxe model. ¬†The price point was under what I raised which will let me buy the specific attachments I need that aren’t coming with (like the baskets, the travel case, et al). ¬†While part of me is a bit nervous about buying this used, I’ve asked the right questions and am pleased that the scooter is on its way from California. ¬†If all goes well, it will be here in time for the second week of the semester and will finally allow me to get around campus like a proper doctoral student.

I’m leaving the GoFundMe up if people still want to contribute. ¬†Mechanical things sometimes need repairs, and while I imagine that I’ll learn how to do some of the repairs myself (like with my manual wheelchair *glares at Delta Airlines’ baggage people*). ¬†I’m also leaving it up because my next medical expense is getting a supportive seat back on my manual chair (as it is my preference to use my own strength to get around whenever possible, like academic conferences or shopping at the grocery store). ¬†Anything helps as my health insurance as a doctoral student is barely helpful *glares at all the medical bills that I’m trying to make payment arrangements on*

Thank you all again!

‚̧ Casey