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Toilets, farts, hair and what 'must be done'

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Elizabeth McClung | 05:47 UK time, Tuesday, 7 October 2008

One thing universal to almost all disabilities/impairments are the biological issues, which need accommodation; and rarely get it. Let me speak of farts. If you have sleep apnea, and have to use a c-pap machine, or need a b-pap to breathe during the night, a common side effect is forced air, ergo, gas and belches. I have a malfunctioning diaphragm and seizures, add the two together and during seizures, while I may get my memory wiped, I will be gasping for air of which SOME may make it into my lungs.

The next day, with a nose bleed and a severe case of the farts, I ask, "Did I have a seizure last night?" I'm told I had three. Ah, well, that explains it. But how do I explain it while in line at the supermarket or while renting a DVD? A ripping sound emerges from the wheelchair, do I look around with a smile going, "Had a seizure yesterday!" Let's try not to remember the MRI tube episode.

So yeah, disability is never just one thing but a whole bag of surprises. And you get used to it. It is amazing what can be gotten used to: leaning over the side of a bed to drain out aspirated liquid and food, having your drool/spittle wiped after a seizure, and flying out of a wheelchair at a bad kerb cut. The days when you're too weak to use the hair dryer, look in the mirror and decide, "I'll live with it!" Then there is having an impacted colon, having a colostomy bag, having a catheter, having to use a cane and having to sit down more often while your friends keep walking. Migraines, seizures and ASD give extreme sensitivity to light or noise while many others give muscle tremors: having the shakes and dropping things with your hands, and biting your lip or side of your mouth when you are tired and trying to eat. Then there are the spontaneous nosebleeds, the nausea from blood pressure, the sensitivity to cold for quads needing blankets and to heat for MS patients needing cooling vests.

But we get used to it.

The general public has no idea, "Oh, MS means you shake or something, or is that Parkinson's, which one does (insert famous person here) have?" As a person with minimal nerves, I have bruises over most of my right side; but my regular spills and smashing into walls would dislocate elbows, shoulders, fingers and ankles of my EDS friends.

Yes, I know these are the things I am NOT supposed to talk about, but this is the reality of disability. For example, here they love to shove baby changing tables inside wheelchair accessible toilets. Okay, I may be a newbie wheelie but it takes a while to get my clothes down, my underwear down and transfer onto the toilet only to hear a mother try the handle of the door and say to her baby, "Oh, you'll have to wait, it will only be a minute." Yeah. No pressure. Also, while there are grab bars to slide OVER to the toilet, often there aren't ones to slide BACK. Which makes getting into the wheelchair a sort of 'climbing Everest with your arms while your underwear is around your ankles' event.

Things just take longer. But for some reason people think that once inside a disabled toilet, you gain the speed of an able bodied person. Well, no, not if you have muscle weakness on one side, or Parkinson's muscle slowing, then a quick toilet trip is 45 minutes. And when you have bladder retention instead of loss, then I sometimes want to scream to the people trying the handle every 30 seconds to see if I have teleported out, "Disabilities are MORE than skin deep!" Meaning, it takes TIME.

Okay... hair... don't know what happens to guys but if you are a female with a chronic illness there is a good chance your nice hair goes bye-bye, either from medical treatment or from auto-immune diseases. But hey, some will start showing up on your face! Fun, fun, fun. And if you are like me, with assisted showering, I don't have the time or energy for leg shaving. It's 40-60 minutes just to shower.

I literally did not know how much head hair I had until I started losing it, and then it goes, and goes, and goes and eventually, no matter how creative your hairdresser, it shows. A friend told me that due to her auto-immune disease she has lost and had her hair come back three times. I was not comforted, I only wanted to know one thing, "How did you make it come back?!"

So we are biological beings living against a standard made for people who have no condition except aging. So it is amazing what can and often MUST be endured. The amount of times I have had to pee to a collective medical audience is not worth remembering. Yet in a future seizure, I will pee: myself, the wheelchair and all near by things ("fountain McClung" they call me). I've opened the apartment door with my teeth because both arms and hands are so shaky I have given up yet STILL need to get inside! Sometimes painful, sometimes embarrassing, sometimes both (try going to the ER with an impacted bowel, woo hoo!), but still, the things that 'must be done.'

Now that I have left you with the image of hairy legged, balding, farting, belching, bruised and slurry speeched woman (oh wait, I hadn't mentioned the slurry speech, darn!). Please come on, give up the stories. I know I am not the only woman with a sudden medical gift of hair (steroids: helps tumors AND gives facial hair!), and I am sure guys have just as many issues. For one thing, wheelchairs are not known for their leaving a person thin, svelte and sleek looking. And the "doing what must be done." Please, I have not done it all, but I have heard a lot. So here I am, interested, wanting to know, what is it about you or your condition that I don't get, what story of that day and thing which "must be done" (how about this horrid phrase, "Needs to be re-broken"), that is endured, that isn't understood. And if you can't talk on that, surely you have a comment on disabled toilets!

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Comments

  • Comment number 1.

    You can get cooling vests? Where? It's not just MSers that can't cope with the heat.

  • Comment number 2.

    I buy them online, they are on ebay (particularly the neck cooling wrap - you carry it with you in a plastic bag, after soaking it in ice water the night before and the gel soaks it up). Those are often sold for construction workers or people who work in the desert, but the cooling vests, you can just google cooling vests. The most effective and expensive are Arctic Heat - which is used by Olympians but which does work - I've had to sleep in them during heat waves to keep from going into heat stroke. I can't compare to otherproducts, but that one is recommended by the US MS society I think.

  • Comment number 3.

    Handicap toilets just kill me sometimes. I was in one once where the hand bars were just about mid-calf level. It's like they thought about putting bumpers at the base to protect the walls, then decided that they would double as hand rails too.
    Hair Loss *sigh*. My widows peak has long ago slid off the slope.
    I love reading your views. They are real, and I love reading your experiences in the disabled world.
    Great article.

  • Comment number 4.

    MY hair appears to be sliding backwards down my back as I age: less on top more on the back. That may not do much for you, Beth, but be assured that I'm not impressed either!

    As for the change tables in the accessible stalls, I suspect they put the things there, because there's so much room in there. At least, there was until they put the change table in there...

    I am the public, and I am also a former St John Ambulance volunteer who was asked to help some people with disabilities with the toilet. Embarrassing for us both... And at work, a lady once asked for my help; her husband was on the floor of the men's accessible stall after, um, finishing his task, and she couldn't lift him by herself. It took the two of us to get him back into his chair and re-dressed.

    So, dear Beth, I've seen hints of your joyous toilet experiences, and I freely admit that I still don't completely 'get it.' So thanks for helping me learn. Sure it's not pretty, but we AB folks need to start 'getting it' because we WILL one day be making you wait for the stall.

    And thanks blogging on Ouch! I love reading (and hearing!!) you here.

    Zen hugs,
    Neil

  • Comment number 5.

    This is a very well-written unblinking look at life with a disability. I'm sure some will find it uncomfortable to read being disinclined to accept themselves as fleshy beings, even when healthy. I think people are so scared that disability could, and will, happen to them that they prefer to ignore it, to pretend that it will never happen to them. But it will happen to everyone. Old age or disability both steal away the bodies we have when young.

    I remember how angry I felt when I realized that intractable pain was going to be a part of my life. But I endure and go forward. It is really the only choice I have.

    Handicapped toilets - no special comments on them.

    Hair loss - yes, and I hate it.

  • Comment number 6.

    Oh, Beth, see how much I care to have gone through the annoying process of getting an Ouch account for yet a third time! At least 6 letters in the username! At least 8 in the password! Ooooh, a secret question! So necessary on this high security site.

    Public restrooms...ah, where I work, the disability stalls are actually pretty good. There's a combination unisex/disability single stall room separate from the men's and women's on each floor, so people with opposite sex assistants or people with nonstandard gender identifications can pee in peace. And for the gender-identified and those who don't need the aid of someone who doesn't share their gender, there's a wheelchair stall, with sink included, in each men's and women's restroom. Plenty of room to turn. And, since there are not supposed to be children at our workplace, no changing tables anywhere. So if you have to change a colostomy bag, or clean up after an "accident", there's both room and privacy. Even better, from my point of view, is that each men's and women's restroom has two additional disability stalls that are not meant for wheelchair users, but for cane and crutch users. Yes! We can pull ourselves back up with bars alongside both sides of the stall!

    Of course, not every place can have such nice conveniences. But there's no reason that restaurants should be using the hallway to the restrooms as storage areas. Or, worse, the restroom itself. Listen up, restaurant managers! Disability aside, no one wants to see high chairs and paper plates stored next to a toilet. Or mops and buckets, even. Stop it! Are you purposely trying to nauseate your patrons?

    As for changing tables, I don't see why they are needed at all in most places. But if a business is going to have them, have them out by the sinks and garbage cans. Babies don't need toilets, but they do need clean-up.

  • Comment number 7.

    THANK YOU for saying this bluntly, clearly and with a little humour. Indeed there are many things which 'must be done' and many AB folk have no idea - hence the change tables in the 'accessible' lavatory. And in Victoria, where we live (smile) how many restaurants can you think of which are fun and funky but, since are often in heritage buildings, feature tiny and/or awkward restrooms, barely accessible by AB folk, let alone someone with a cane. No way a wheelchair would fit.
    Something I didn't notice you mention (but perhaps I missed it) was menstruation for us female folks who do (menstruate). Perhaps this is a little graphic, but isn't that the point? Anyway, because I am concerned about the amount of waste generated by disposable 'feminine hygiene' products (because we are so dirty) and because I like to save money, I use a combination of solutions.
    The Diva Cup is made from silicone and fits inside, but does not absorb. Thus, it requires emptying (into toilet) and a rinse in the sink before re-use. It's simple and takes a short time, but you do need a sink with some privacy, unless you're comfortable waving it around in the communal sink area.
    While this is not a strict disability issue, I believe that many women have experienced montly mishaps which require some... cleaning detail. This monthly (as in OFTEN) occurance does require attention and sometimes immediately!
    If your mobility is impaired, or perhaps you have limited use of your hands, how the heck are you to tend to Mother Nature in a quick and clean manner? Especially, as you said, when that darned doorhandle keeps rattling?!
    Yep, I've lost a good chunk of my hair - and right on top of my head, close to the hairline, where I just can't seem to conceal it. Opiate-induced severe constipation the likes of which you've never imagined?! Check. Boo, check again.
    For me, due to the severe nerve pain in my leg, sitting down on anything can be excruciating, including a toilet. In fact, most chairs and toilets, too, hit a real 'trigger point' for me. Couple that with the needing to spend an hour on the loo and can you guess what that spells? Sheesh, I never imagined needing to take extra pain meds because I had to... uh... do a #2. And everyone close to me ends up hearing about it when I've gone to the toilet and been gone too long... people get worried. How do you explain what people really don't tend to want to hear about? "I'm ok, I'm just having trouble with my impacted stool!"
    Yeah, really great social conversation!
    Great post, Elizabeth. I enjoyed reading your gentle and thought provoking post.

  • Comment number 8.

    Lisa: nothing really scares guys away from commenting as going into detail into menses, so I sort of omitted that in this one. But you bring up a good point about use of bio-friendly products.

    As for victoria, bathrooms, forget it, as Yanub says, they have usually placed extra equipment on the hallway there, or there is only one table that isn't in the main, two steps down, seating area and they don't take reservations. The ones I can get to, I have entered at times through the garbage bins and then from there through the kitchen.

    I have been told that pain also creates pain loss, so my hope is smother the pain, get back the hair. That's what keeps me from hat shopping.

    Gentle? I actually tend to use the ferry to replicate the motion of my intestines, yeah, so you can't use that toilet cause I'm in it!

    Yanub: My goodness, your workplace sounds like heaven on earth, I don't know if I have ever seen a double railed stall for people with canes and crutches, EVER. I must come visit where you work to take a picture. As you saw, where I LIVE, I get disabled outhouses! I agree with your comments about stacking things there, and changing rooms are also terrible at this in shopping places, which is why I now change in public if they won't clear the room (exhibitionist, me?).

    bvfrenchknitter: Yes, I think that is what people find so difficult, the fear of it. There is an article today in the Guardian, I think about how Judges won't admit that hate crimes happen to people with disabilities, that people can't fear us, but they do, oddly. And the more they know, they more they fear, have had careworkers tell me, "God, I hope I don't end up like you one day." (always a cheery start!).

    Yeah, the anger, frustration which builds to anger because it isn't fair, and no one is going to fix it.

    Hair: what peeves me the most is how ACCEPTED it is when female get sick for something other than chemo treatment to go, "Oh yeah, you'll lose your hair" - well, how odd that billions are spent by men, probably used by the same GP's who callously say, "Yeah, thinning and balding is a common side effect."

    If the medical establishment can understand for breast cancer and other types of cancer that hair loss is traumatic for women, why can't the rest of medicine?

    Neil: Ah, well, let me introduce you to a concept called, "Waxing" - it doesn't REALLY hurt, honest! Okay it does but takes care of 1/2 that problem!

    Yeah on changing tables, exactly. Like when we go to the pool and have to get the life guard to inform the people that blue sign with chair on it doesn't mean "family changing stall"

    If you've seen that much you get it a lot more than most and get it enough to realize the extra time and energy expended, in just getting to the darned toilet and back.

    Cheers

    mykidsmylife: Yeah, I have seen some low ones but not that low, at least not yet, yesh! Well the thing about hair, is that you never knew how much it meant until it starts going away, pretty much the standard for beauty in the west (having SOME hair).

    I will love to keep writing them, hopefully with humor on the less pain days, the pain days the sarcasm turns into a bit of a rant. I have to watch that.

  • Comment number 9.

    Greetings from Wales! Another great article from Beth! - keep up the good work it is much appreciated. The batwing pack is amazing....

  • Comment number 10.

    It is good that you post about this stuff. The "what must be done" is so often not talked about. I also am bothered by how many disabled toilets also have the change table in them or are used as storage. I also don't get ehy they often only have grab bars on one side instead of both. Are disabled people all blessed with super arm strength on one side? I know I am not.

    The hair loss compensation where the head loses hair as the chin gains it is also bothersome for us females. Bald, bearded ladies are not in the societal norm for beauty.

    Thanks for the post and keep on discussing the less plasant sides of disability. Not all disabilities are stable conditions with limited ick factor. It is good to hear about the other types of disabilities and the challenges they bring.

  • Comment number 11.

    Ooh talking of restaurants. I get so fed up of phoning up, asking about wheelchair access; if lucky it'll be accessible, but then I need to ask whether the toilets are accessible. Often the answer to that is no. I have a functioning bladder-yes luckily-but for some reason the AB world seem to assume wheelchair users won't need to pee away the drinks they serve.

    At uni the other day I had someone try and open the bifold door into the disabled loo while i was in it. They giggled and were heard running off. Maturity of university?!

  • Comment number 12.

    I don't have a wheelchair, but I can definately attest to the expectation to be as fast, physically or otherwise as people without disabilities in a disability bathroom. It's like folks think that "disability = wheelchair," and that's it. Perhaps this is because of the wheelchair emblem used for PWDs? They don't seem to always grasp that there are alot of things about that wheelchair, or cane or other accessibility device that make our physical and emotional realities and the time they take, different.

    For me, the worst thing is having to plan for three to two weeks of flat on my back "in bed" time, every time I want to go out to an event. I'm going to a conference this weekend and I'm speaking at it, on disability and BDSM actually! And I'll be paying for it, pain and exhaustion wise, for the next couple of weeks.

    People simply don't grasp what they can't "see." We are quite a sight dependent world, at least western culture seems to be. They can't "see" what you're doing in the bathroom, so they assume, wrongly, that what your doing and the time it takes in a disability bathroom is exactly what THEY are doing. It's frustrating, isn't it?

    Time and Disability. Now THERE'S a topic for a blog discussion. How does having disabilities or different abilities affect your concept of time, etc.?

    It would be a shame if they closed off the blogging section as sooooo many writers have gained credibility and had other works published simply due to being a blogger on OUCH. Sad, we need bloggers such as you and Arthritic Young Thing out there, who are queer crips! *hugs*

  • Comment number 13.

    As the token AB in the room, I'll cop to not realizing how many things go along with disability until I entered the disability blogosphere and made some friends. But I think this all goes back to the same damn misconception that leads ABs to think people with disabilities don't have sex, or even big sloppy makeout sessions.

    I'm not sure exactly what the root of that is, but I think it has to do with some sort of denial reflex. Some people find the idea of acquiring a disability so scary that they keep a solid chunk of emotional brick in between them and anyone with a serious disability, so as to be able to hang onto the idea that, "This will never happen to me!"

    So many questions. Whyis it more scary to be disabled than to age, when age IS a disability? Why can people buy a house and plan ahead for kids even if they're not seeing anyone, but can't plan ahead by buying an accessible house in case they ever have a friend who uses a wheelchair visit?

    So many things wrong with our society, not least of which is the ability to laugh at an able-bodied man's farts and see them as a crude form of humorous communication, yet pretend the disabled person farting in the corner doesn't exist. I think that would hurt much more than having a bodily function laughed off.

  • Comment number 14.

    Dr. McClung,

    Thank you for taking your insight and humor to this issue. It is a very real one that many of us face.

    A lot of what you said here needed to be said. In fact it probably needs to be said more than once. There is a lot of misunderstanding and miscommunication out there about illness and disabilites; -so many people just Don't. Get. It. It is therefore utterly refreshing to read your ...exposés (for want of a better word) of how life is from within a disabilty.

    There are many people out there with disabilities, but very few can write like you can. We rely on you and your rare ilk to take our message to the world.

    As for the embarrassing: Like many people with a neurological disease, I sufer with seberrhoric dermatitis, as soem sort of "side effect". This mean the skin comes off my face in flakes, leaving raw red patches in it's wake. I have no idea what caused the sudden enormous acne breakouts, which I also have recently. Perhaps encroaching middle age? Nonetheless, the combination is less than appealing.

    These skin issues appear to have had some kind of effect on my voice? People definitely have trouble hearing me these day. I hate to think they are so shallow, that they are distracted by the mess that has become of my once-beautiful face, but that is probably the unhappy truth.

    I have never discussed this before, and it felt good to get it out. Please keep up the good work.

    One Sick Mother.

  • Comment number 15.

    At a pub recently I reported discreetly to the guy beyond the bar that the disabled loo needed a little clean up (some old guy had obviously missed and hit the seat). Now I can just about manage to hover - but some folks who would use that loo cannot. But the guy behind the bar apologised really loudly and looked like a startled bunny.

    I wouldn't ordinarily report a tiny trickly of wee on a toilet seat but when I thought of someone maybe having to slide across that seat ... eww.

    I'm always a bit nervous about using disabled toilets as a seemingly healthy and walking person. But there's a lot of times when using the ordinary toilets is just not practical for me.

    I arrived at a Thai restaraunt in a wheelchair and transferred to the table. The waiter assured me there was a toilet for disabled persons on the ground floor. At the end of the meal I asked the lady who seemed to be in charge where the toilet was and she would only point downstairs to the ordinary toilets. Even when I asked was there one on this floor with a pleading look on my face she seemed to think i was crazy and ushered me down the stairs.

    By the time I puffed my way back up the stairs, with my just eaten thai meal heading into spasms in my bowel with every step, my husband was waiting at the top of the stairs with the wheelchair and the lady was apologising profusely.

    It's one of the reasons why you need to be prepared to offer the concession without waiting for someone to walk in and demand special treatment in a very loud voice.

    At a theme park I couldn't wait any longer for the disabled toilet (of which there was one in the main park) so as the ladies was quiet I went in there leaving my husband outside with my wheelchair. He reported that a man with a young child emerged out of the disabled loo any didn't even give the empty wheelchair outside a second look. But hey - maybe he was a seemingly healthy but invisibly disabed person too? Maybe but I'm not so sure.

  • Comment number 16.

    I'm with yanub - had to re-register because the site didn't recognize me - ridiculous.

    Public toilets - ah, where do I start! I've sometimes wanted to write a book about the ones I've been in - think there's a market for that? It ranges from the one with water all over the floor, one that was HUGE (I mean, "party in the can" huge) and the worst of them all, in a small dirty bar in Venice Beach where I had to somehow manage to walk in (despite the wheelchair requirement) due to narrow turns and sheer amount of crap stored there.

    Love your posts here and love this area in general - real people writing about the real issues of disability. Toilets and bodily functions are a big part and it's nice to have a place to discuss (and laugh at) that.

  • Comment number 17.

    Thank you, the first proper and well thought out piece on an Ouch blog for some time.

    -----------

    I'm always a bit nervous about using disabled toilets as a seemingly healthy and walking person. But there's a lot of times when using the ordinary toilets is just not practical for me.

    ---------

    As a person with disabilities I don't see the need for you to be embarrassed. I also dont see the need for disabled toilets to be rigfenced for exclusive use of disabled people.

    Is someone with a weak bladder who does not qualified a disabled not is just as much need if the cubicles are all full in the non-disabled versions?

  • Comment number 18.

    I absolutely love the humorous edge you brought to your coping with your disability. Now I can add even more challenge to disabled bathrooms. As a daughter to 2 disabled parents, I have had to try to manage going into the disabled toilet with my mother, may she rest in peace, and trying to figure out how to maneuver the wheelchair and the patient in the space provided, while still protecting the patient's privacy and not having to perform acrobatics myself. My mother could not get herself up and onto the toilet, did not have the strength to hold onto the bars to lift herself or slide along them and required help in hygiene, too. But at least she was a lightweight. My dad, on the other hand, who has similar issues requires 2 people to get him onto the toilet. Picture that scenario in a disabled cubicle!
    Anyway, keep your sense of humor, because laughter is definitely the best medicine I have found so far.

  • Comment number 19.

    Thank you so much for this post; people talk about this stuff so little but it's very much a reality.

  • Comment number 20.

    "what is it about you or your condition that I don't get, what story of that day and thing which 'must be done'... that is endured, that isn't understood."

    It's not as graphic or probably anywhere near as interesting as your story, but I am sick of my body's inability to process medication properly. It's totally invisible, and drives me completely up the wall. This morning I was sitting in the doctor's office talking about my 'juggling act' where, every morning, I wake up and try to work out what hurts more. Any sign of a headache? Then that has to take absolute priority over everything else, and the painkillers I take will be targeted at that (and useless for anything else). Or, on the lucky lucky mornings when there's no migraine, I can start considering proper pain control for my knees or back or shoulders or hands - but only if I'm absolutely sure that tramadol won't set off a migraine that has me back to vomiting over the toilet for hours at a time. If there's any chance of that, it's plain useless codeine for me (although I've just started trying co-dydramol to see if it's any better). If, on close assessment, I decide there's no chance of this, then I reach the Ultimate Level, and am allowed to have a wonderful reduced-pain day with tramadol. At least until the other side effects set in...

    Elizabeth, thanks so much for talking about things like this so openly. I really wish so many people didn't assume that disability is *just* about physical access. Yes, that's incredibly important - but if we forget the human stories behind the wheelchair ramps, we risk painting ourselves into a cliquey little corner where only those who never experience pain or messy complications are welcome in the disability movement. And that should never, ever happen.

    - lilwatchergirl: professional, would-be academic, and highly talented vomiter.

  • Comment number 21.

    Hi Elizabeth, great post! I started a series of posts on my blog http://benefitscroungingscum.blogspot.com/
    which I call 'Bog Off!' aimed at highlighting the sorry state of most accessible toilets.
    I'm always asking for people to send me photos of examples they've seen, good or more likely bad. So if anyone wants to take part, my email address is on the blog.
    Bendy Girl

  • Comment number 22.

    My own story is one to bring out the smile, I went to a family bash in the Forest Dean area, the hotel which was choosen by my wifes family as the venue for the bash though five star could accomdate myself so I put in hotel next door, which though I was told very disabled friendly, but that is another story in a another time. But as the evening went on I need to do natures duty, I asked the desk where I could use a toilet, the woman said the gents is outside!!! but we knew of you so we arranged for you to use the ladies!!! well I asked had other ladies been told of this, as I did not fancy being on the sex reg for a thousand years. Yes was the reply, so I went inside god how did I manage to get my chair in and do a slide job was in it's self a work of art. But shall I say half way through my relief a sound so I look through the crack in the door frame and there was three young woman standing there, god what time, they had seen my chair in the door entrance, so when I left I said to them it is o.k to go in no paint is wet I am the painter!!!!

 

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