Tag Archives: communication

Derailure to Communicate.

27 Feb

Interrobang!?*

Pardon my puntification.

Sorry.  I just couldn’t stop.

I’m all done now.  Let’s carry on as though that didn’t happen.  Thank you.

I know a few folks who seem to be experts in this sort of derailing, and sometimes it can be difficult to determine if they are being unintentional asshats, are just not savvy in the realm of interpersonal communications, are intentionally gaslighting you (link to a fantastic piece on The Good Men Project), or are disordered something-paths or narcissists that only dwell in their own little realm of precision asshattery (or assmillinery.  Yes, I know a few that not only make their own hats but they trim, bedazzle, bejewel, and embroider their asshats to dazzle and confuse unsuspecting people trying to communicate and generally live with them.)

This is a fantastic piece that came to my attention, awhile back, courtesy of The Perorations of Lady Bracknell.  I am sharing this version, as it originally appeared and now, thankfully, appears on Bird Of Paradox.  The website, Derailing For Dummies, is back online, but I can’t seem to find this particular piece native on their site/blog.

I hope it brings some clarity and awareness of communication etiquette, be it your own or that of someone who is a serial derailor (derailetor?).

Even the most adept communicator can benefit from this gem.

Here’s the link:

Derailing For Dummies (reconstructed from Google Cache, by BirdOfParadox.Wordpress.com)

Cheers,

B.

*Stylized Interrobang ink by Matt Lackey at Howl Gallery Fort Myers, Florida.  I’ve had this for over a year.  I like the versatility of the interrobang.  I also have an asterisk to tell folks that there is more to my story.

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Sample in a Jar.

31 Mar

So much is going on around me, and in my brain, while my body does little but sleep even when the rest of me appears to be awake.  So tired, battling another fever and the unrelenting pull of deep sleep.  Thankfully though, my body seems to have rebounded from the bad reaction (an unhappy liver) from the last RA medicine on the list that will not send me into severe anemia or make me swell up like a puffer fish.  Or I should say, more like a puffer fish.  I’ve got the moon face prednisone thing going on full force but the rest of me is shrinking while I sleep, not that I mind as I have plenty of cushioning provided by years of stress, medications, and finding an enemy in food as so many foods just require too much thought to eat them and cover them with all of the variables that impact my ability to utilize nutrients without running too sweet or too low because some other variable didn’t occur to me and the thought of having to prepare anything, combined with weakened and stiff hands and vertigo, usually is enough to send me back to sleep or weigh me down with a heavy enough blanket that I won’t wander off to find something.  This isn’t new.  Actually, over the past few weeks I have been eating more and eating better than the past couple of years, and I dropped 15lbs.  I just wish I had the energy to go with it and I really just hate being this sick all of the time.  I hate not being able to do as much as I want to do for Alex and we don’t get to play together much. Though we have been catching up on movies, and episodes of Little House and the occasional episode of The Golden Girls (he thinks the girls are hilarious).

We are in survival mode thanks to his Dad’s new job, and I spend all of the time when Alex is in school sleeping, but I am getting to spend more time having quiet talks and reading with him.  It blows my mind that two years ago he couldn’t tell us the “story” of his day and he mostly spoke in quotes from tv shows and recited lines from books, and now he is just a constant stream of chatter (mostly about 1980’s video games- his latest special interest) and he often shares little tidbits about his day as he’s snuggling into bed for the night.  He’s an amazing little boy and the sweetest kid ever.  I said to him “I’m sorry I’m so sick all of the time.  I just want to have enough energy to play and help you.” and he tells me not to apologize because it’s not my fault and that the stuff I can do to help him and play with him makes me the best Mama ever.  I imagine that even without Asperger’s we’d be so close, but I do believe that we are closer because in some ways we are like two exchange students who speak the same language, in a foreign land where nobody speaks their language.  It’s frustrating sometimes, but more often than not we both find so much joy in our unique neurobiology.

Though lately, it is the “other” that has been on my mind too, as I feverishly clip blog bits and news pieces to Evernote for focused viewing when I can glue them together in a meaningful form.  I hate how non-sick people just don’t get it and offer criticism instead of sympathy or empathy or what all of us people living with degenerative and debilitating illness really would like- to be treated kindly and to be given the benefit of the doubt on occasion.  So here are my suggestions for non-sick people who just don’t freaking get it.

Don’t be an asshole because I self-advocate.

Don’t assume that I am negative because I mention chemo on occasion or a medication or physical therapy.

My poor health and my communicating about my experiences (some of them are damn funny, some are poignant, very few are depressing in the grand scheme of things because this being sick thing isn’t a choice, it’s not a personality defect, it’s a body rebelling against itself for unknown reasons that started when I was less than 2 years old. I would be negative and probably go some version of off the deep end if I didn’t talk about it.)

Don’t assume that nobody wants to read about my experiences, you’d be surprised how many of my dearest friends and I have found each other because of our own personal wars.  Don’t shit on veterans for talking about their war, especially if you are too young or too healthy to have been enlisted.

Don’t be an asshole because I communicate with other people like me and you overhear the conversation through the din of social networking.

Don’t be an ass and assume that because I can type a few words once a day (or in the case of my blog lately, once every 2 months or so…I am always thinking about my blog and you, dear reader, even if I haven’t been nearly as prolific as I would like) that I can do anything else.

It’s all about the spoons.

Go ahead and be a selfish turd because you feel that I don’t try hard enough or I don’t put the effort into relationships.  Totally ignore the fact that my abilities and my availability depend so much more on current technologies than the old school methods you feel are “real communication”.  I’m sure people thought the telegraph and telephone were the devil’s playthings, but times they are a changin’ and as much as some like to criticize social networking (typically those who have a very singular and narcissistic and selfish perspective on how they believe everyone else should use it) there are those of us that find Facebook to be a life line and for many of us, it’s not the way we used to do things, but it’s the way we do things now and for those of us who have communication disorders, hearing or speech impairment, are caregivers and/or insomniacs, or just don’t know when we’ll have the time and energy to pick up a phone or if we can even get to the phone if you return our call.

So go ahead, demand that the person in your life who is managing illness use their few precious spoons to call you because you don’t know what it is like to have limited spoons and you don’t know the snowball effect that using up spoons to fast can have on that person, their health, their kids, their home, their job… If you do communicate with them, however briefly, via any social network, just be a judgmental ass and say that the person’s “friends” aren’t real friends because they aren’t live and in person and standing in the same room chatting.  Most of us that do prefer this method of communication, due to illness or disability or caregiving and treatment schedules, have been betrayed by our own bodies. For many, social networks are a way to stay alive, be buoyed by shared experiences, be entertained, keep in touch and banish the loneliness that can come when you can’t drive, are stabbed by sunlight, have trouble walking, take medications that alter your ability to operate heavy machinery or even remember to put your pants on before you leave the house to get the mail.

I was just shocked at how much I read over the past couple of weeks about people with any chronic, debilitating illness or any deficit impact communication via any method, all having experiences with complete jerks who say really stupid things about our challenges.

Then again, there are those that see the true beings beneath the scratched and dented exteriors, behind the assistive technologies, and within the neurological differences.  Those people are the ones who are the real friends, and it has nothing to do with geographic proximity and everything to do with mutual respect and love and the understanding that some people find triumph in getting an A in a class, some people find it in getting a promotion or a new car, but some of us get to see the beauty in everyday things and the little triumphs that are hard won and brushed aside by many able-bodied souls.  I’d love to be in the position to post status updates about keeping up and surpassing the Jones’ (actually, I probably wouldn’t) or feeling like posting what I ate for lunch or that I’m out and about for a mani-pedi and lunch with friends is important news to share.  But my life is more complex than that. My friends, my true friends, celebrate the little victories with me, and I rejoice with them when they find their little triumphs.  So it’s not “my BLT is repeating on me” or “what color should they do my nails?” but for us the posts about getting through another treatment (or finishing a treatment and getting fantastic labs back!), or having a morning where we felt so good that we sat outside and read a book or that a loved one did something really sweet for us, or for the parents of special needs kids- when our kid reaches one of those little teeny goals that we would have never even considered a goal until we entered this strange and wonderful and brutally hard world of raising a special needs kid to be their best.  That’s not negative.  That’s amazing.

It feels damn good when something happens that means more hope or progress or even just a good laugh.   It feels shitty when other people, who cannot begin to imagine (or can’t even feign empathy or just keep their mouths/fingers still) decide to drop a steamer on these little joys and little pieces of hope that are sweet nectar to those of us who have known and seen the worst in our physical selves, emotions, and in others.

That’s all.  End rant.  Soapbox being sent out for repairs.  Oh who am I kidding, it’s just going to the garage with the other stuff that I will fix one day when I am up to it.  I just wanted to put this out there,  in hopes that anyone who has been critical of an ill person in their lives, because of what they can no longer do or do differently, will be more mindful if they cannot grasp they why or how.  I also wanted to put this out there to remind my fellow beings out there who are feeling muted or lonely that many of us have been there and many of us won’t disappear when the world gets in your way or your body protests everything.

I will post resources and links about communication and relationships when living with chronic illness, or coming to grips with a loved one’s chronic illness, as I find them.  I would love if folks would add their experiences and any links or resources they have found helpful, in the comments section.

For now I’ll leave you with one that just makes me feel less like a patient and more like the Chronic Babe that I am.  Of course, that is the fantastic ChronicBabe.com (be sure to sign up for the ChronicBabe Goody Bag!  It’s a joy to read the email/newsletter and it puts the spring back in my…um in my hair. And eventually my step.  Fingers stuck in crossed position.

xo,

B

Huh? What?

11 Oct

Sandy over at AspieTeacher.com (an amazing blog by an amazing woman…If you are, know, or teach an Aspie then it is an incredible resource… If you just want to know more about life with Asperger’s, then what are you waiting for? Head on over!

She wrote a great piece (and I apologize for only getting to it now) on Auditory Processing Disorder that expresses her experience with APD and Asperger’s.

I don’t talk about my experiences with Asperger’s that often, at least here.  Perhaps I should start doing so, as it has come to light that I have been harshly criticized by people who should know better, but for some reason, don’t.  Perhaps I need to stop giving people the benefit of the doubt, as the favor is rarely returned even when it is an extremely reasonable accommodation, causing little to no discomfort or inconvenience to the party on the other side of the communique. .

I do talk quite a bit about raising a child with Asperger’s, as I find some of my issues are challenging to explain, and sometimes I feel like a freak (and not in a jovial “hey, I’m embracing my freakdom” sort of way)… That is until I find that there are plenty of bloggers out there (and non-web based authors) who do talk about it and I realize that I’m not alone, and I’m not just some weirdo who (in the case of CAPD) can’t properly communicate with the ease of sending words and receiving them verbally and aurally.   I need time and space and often paper or my keyboard or a dark, quiet room to digest what I have heard and piece together an appropriate reply.  I need visuals to understand auditory input.  I produce visuals to respond (I type really fast and thankfully while my grip is weak and I can barely pincer-grasp/hold these days, my typing has not been impacted, though I can’t do it when the rest of me is *that* exhausted, I still can do it when I’m heading to that point, when my voice fails me). I watch TV with closed captioning on and the volume up so I can hear clearly (as long as there is no other sound in the house.  Even someone talking in the other room means I cannot focus my hearing on the TV’s sound as everything comes in at the same volume, it’s like sounds competing with each other.  It’s exhausting.  To do anything that doesn’t involve sound as an integral part of the activity, I wear earplugs or sound dampening headphones.  Simply being in the next room while baldguy helps Alex with his homework can be information overload for me, even though I am not participating, it’s like my brain just keeps absorbing and things get mashed up and jumbled and it exhausts me.  Daily sounds are a constant assault and basic things like the dishwasher and the dryer, even the coffee maker and the air conditioner, have me putting up my defenses the moment their sounds are audible.  My defense mechanism seems to be sleep.  Thursdays I can’t even begin to wake up until after 11am, as the landscapers are electrically pruning and mowing the communal areas of our development and *yawn*

With a small and now a not-so-small child around, it was hard to just pop in a pair of earplugs, and I often just gave up on doing anything that wasn’t Alex’s immediate activity-focused.  As most parents of children on the spectrum know, we rely so heavily on our senses to track our children.  We still have baby locks on doors in our home, not because Mr. Smartypants can’t figure them out, but because they do make some sound when a breach is attempted, and that sound can be just enough warning to jump into action.  Thankfully, Alex is not a runner (or a climber). Unfortunately, we usually don’t realize he is getting sick with a fever or ear infection until he starts climbing and totally loses his sense of danger (when he’s well he is the safety captain of our home), so we rely on little auditory and visual clues and a few extra seconds have, in the past, meant avoiding injury or worse.

Baldguy’s two year stint at home has meant that the time when I was once able to control the flux of sound in my environment, when Alex was at school for a couple of hours in the morning, disappeared instantly.   Here we are, more than two years since Jeff lost his job, and I still am distracted by the sound of his chair squeaking or the laundry being run during daylight.   Telephones have been off limits as I cannot focus enough to even process the bare minimum if there is extraneous sound, and I’m on edge at the potential of a distracting sound to the point where I can’t even make a word budge out of my mouth.  It’s frustrating.  It was isolating, but thankfully family and friends are on Facebook for the most part, so I am able to connect in a way that allows me the accommodations  I need, and blogging has also given me a place to put the words that I cannot speak.  The blogged stuff isn’t so much about what I can’t verbally express but it gives me a place to hopefully start a new conversation, albeit one that happens “virtually” and with the typed word.  Writing things down has been a trend since I started being aware of the changes in my auditory processing.  Oddly,  CAPD hasn’t been something I have had since birth, but rather something that seems to have  been caused by other events in my physiology.  Though perhaps I am mistaken and I was just unaware of the difficulty and compensated, under my own radar,  in my earlier years.  Who knows. All I know is what is on my plate now, and if nothing else has been learned over the past 34 years, I have certainly learned to adapt.

I toyed with the idea of adding a CapTel phone, and then the online version that Sprint offers, but that still wouldn’t give me the tools to respond the way I need to.  Email and Facebook private messaging seems more logical as I can digest the information and reply appropriately.  On some days I don’t even log on, I usually pop in for a few minutes, in the midst of the constant tasks surrounding Alex and my therapies and keeping him fed these days.  Communicating this way allows me to communicate effectively, as though I do not have CAPD and as though I do not have Asperger’s.  I don’t text because I don’t have a cell phone.  What?  You heard/read me!  Ok, I have one, but it is for emergencies and thus far I have tallied up a great deal of roll over minutes (on my Virgin pay as you go plan) that I will never use on my little old phone that can’t even go online because it is only slightly more modern than the old brick phones.  The only reason I would want never technology on a cell phone is so I could have a handy camera with me, but then I’d have to take the phone with me, and in this current status I have no idea where it is.  I’m sure it’s plugged in and charging somewhere and if we had to evacuate for a hurricane I’d surely locate it.  I hope.

But I will always be grateful for this technology, allowing me to be somewhat functional in the world, even when I can’t get out of bed, or I can’t get the words out in a spoken form.   I will always be grateful for the community of people who shift focus away from what I can’t do and look at what I can do(preferably not noticing that I may take notes during casual conversation or that I look at their mouths when they talk yet I’m not big on eye contact, especially when I am trying to figure out how to get my words out).  That is my hope for Alex in the future, that people see that amazing person that he is and any deficits are not even noticed as they are part of the whole package of awesome that he truly is.  For me?  All I want is the benefit of the doubt and acceptance. On some days it really seems like that is too much to ask and communication goes haywire, but in the 99% of the time when it does work it is nothing short of miraculous.

Anyway… The picture above is Alex with his gigantic headphones that he uses for his listening therapy (which I will be starting soon and it may help my CAPD.  It has definitely helped Alex.  I will blog about that in the future)… The review of the headphones said “these are not made for people with normal size heads!  these are for people with abnormally giant heads” which I guess was intended as a negative review, but that comment was definitely a major selling point for us as we all have very large heads…

More tomorrow…

xo

B
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No really! I’m working on something!

7 Oct

Gahhhhh! It’s after midnight here…

I have been bowled over by this fever and I’m so tired.  Not just physically. I’m just wholly drained.  I should have every bit of energy heading toward Alex and making this transition to health smooth and enjoyable, because hey, we have to live this lifestyle or continue to pay the consequences of G6PD Deficiency.  Some energy has been diverted to try to decipher the tornadic tantrums of grownups who still haven’t learned to communicate appropriately.

*yawn*

It’s late.  More later today.

xo

Bek

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Let’s Get It On.

30 Apr

lip-1

I was reading a well-known author’s blog a few weeks ago.  The author had recently tweeted about having a miscarriage at work.  Sure there were the usual comments from the Netiquette Gestapo, and debate from the readers who felt that it’s a common life event and why not bring it out into discussion because it does impact both parties (well technically all three parties… just didn’t want to upset the folks who may happen onto this blog that are pro-life, at least not at this point in the discussion).

Then the discussion turned into the traditional, comment section Manic Merry Go Round of Abortion Debates.

As it turns out the author had spoken previously about health conditions and how it would be dangerous to carry a child.  It was also revealed that she had previous pregnancies that did not result in a live birth.

Then it was rapidly revealed that many pro-lifers commenting not only don’t believe in abortion to save the life of the mother, but that people with health conditions and disabilities who cannot safely carry a child should not be having sex in the first place (because blah blah blah abstinence is the only thing that is 100%, as our friend Rose Nyland found out on The Golden Girls when she sat on a public toilet by accident and worried and worried until those truly so-golden-they-shine-like-the-sun girlfriends of hers gave her a little modern (compared to current policy, the 80’s was modern) reproductive health lesson).

So disabled women (as clearly a disabled man would not be in the market for an abortion for his own person) should not have sex.

Ever.

 

EVER.

Even within the constraints of holy (or wholly secular) matrimony.

 

EVER.

 

 

Oh and god doesn’t make mistakes, so a woman who has a pregnancy putting her life at risk, or having an extreme risk of making that woman unable to care for the child, should carry the child as close to term and then let the wonders of the NICU take over and if the woman admits that she didn’t want the child to begin with and was just a nasty whore, then yay! Adoption! The cure to all conundrums!

Gag.

It’s ableism at it’s worse.  It’s all fine and good to teach kids about abstinence knowing they are going to go screw each other without protection, because Yay! Adoption! (I’m not against adoption but I am 100% against people pushing adoption as a perfect replacement for abortion. It is not a replacement at all. Comparing them is like comparing apples and Volkswagens.)

But disabled people…And disabled people parts and…

Ewwww.

Disabled people don’t have sex.

I mean, how would we. Being all disabledy and all.

On a similar blog, someone said that if disabled folks who have been certified disabled, and receive benefits (to keep them from being more undesirable to society), can have sex then they should be working. As what?  Hookers?  Temps so the Farmer’s Daughter can go on vaca?  What the fuck?!?!?

So here’s the deal folks:

Disabled people do have sex.

And not just to gross out and confuse the heck out of non-disabled folks and make Google’s search trends that much more hilarious.

We have sex just like regular people.

Well, depending on the disability, there might be some modification and creativity involved.

 

And it’s not gross.

It’s not obscene (well, that depends on the individual… we have as many microbrews of sexual adventure as regular folks), and it’s certainly not always for procreation.

 

It may even be for pleasure.

 

GASP. Did I just say that? What if the world finds out? What if disabled people find out they can do things for pleasure?!  (some of us already know and some of us believe pleasure is a fantastic and curious and dynamic beastie deserving of careful field research throughout our lifetimes).   Any pro-lifer that insists they only have a go with their one partner for procreative intentions is most likely (I’m sure there is an exception to this somewhere) talking rubbish.

And it’s not just a gross out factor for some folks, it’s the whole Madonna-Whore thing, but in the way that they demand we be the Madonna, and they can’t comprehend that we could even function as a sex pot.

 

People with disabilities are often assumed to be kind, and sweet, and because we have lived through or with illness and/or injury and have all these challenges that haven’t killed us (yet) we could only be stronger and better and much more wise than able bodied folks… Then, occasionally, we get all spicy and tell it like it is to teach an important lesson with street wise sass to the wholesome healthy cheerleader type who takes everything for granted on an afterschool special.

We are not that person.

We don’t fit that ideal (or most others, for that matter) or those caricatures.

We are regular people who remind non-disabled folks that they could be in our shoes, chair, modified mortality rate group, or handicapped spot at the store.

We are, mostly, kind of boring like the rest of you.

Sorry to burst that bubble.

Guess what else? We don’t want your pity.

We wan’t equality, access, and to be accepted.

 

It would be really nice for people to accept us as human beings.  It would be nice for people to offer to help when we need it and then actually help when we do ask for it.

 

It would be pretty sweet if we could ask for accommodations that we need to do our jobs, to travel, to be a part of families and groups of friends, without being treated like a burden  or worse, having our differences outwardly ignored to the point of zero accommodation and being shut out of more parts of the world.

 

It would be marvelous if asking for accommodation (in the bedroom, on the kitchen floor, couch, etc… oh and in our platonic relationships and at work and school as well) wouldn’t be one of the most stressful things ever for those of us that live with disabilities that are not obvious with a glance (Mine is mostly hidden, but I have scars. They tell some wild stories of survival against all odds.  Anyone want to see the one on my back?  It looks like a foot long zipper on my human suit.).

Communication should be (again, ideally) that open with our fellow adventurers, and not scary (nerves are fine, fear may float your boat but I have had enough in my life to be all done with the fear as a precursor to pleasure. Nervous anticipation is fine, but fear has a chilling effect on me), but it can take a lifetime to come to that understanding, find your voice, and find a partner who doesn’t ignore the fact that you are not just an orifice or appendage.

 

It would be perfect if we could live in a world where we could be ourselves and not be held to different standards because of our disabilities.

 

I find that living with multiple disabilities is hard, parenting with multiple disabilities is challenging (not the parenting and raising an awesome kid part, but the physical challenges and managing with my level of fatigue and pain and no supports since before my son was born), but really the most daunting challenge I face is the shitty attitudes and stereotypes applied by able bodied folks.  It isn’t just in workplaces, or on blog comments, it also exists in families.

Non-disabled folks often do not believe that ableism exists in families, but it does. And it is the worst kind of ableism.  Many of us are happy to educate and I will forgive minor moments of ignorance (with stern correction, of course), out in the world.  But in the supposedly safe havens of our extended families, many of us folk that are living with disabilities (of all kinds) find that we are not quite tolerated in our own families if we require accommodation.

It’s easier to ignore our differences, but ignoring them and ignoring our pleas for assistance (directed at folks that are supposed to love us and not judge us harshly and without explanation) destroys couples and larger families more than an accident, or an illness, or a botched surgery.

Knowing this, it’s no wonder, that some of us may be more timid to ask for what we need or what we want in our other relationships, particularly the sexual ones. We are expected to be grateful and people assume that our relationship partners are giving something super fantastic up by being with us. It never occurs to most people not in the disability community that all humans have foibles, challenges, physical stuff, head stuff, complicated histories (most people with disabilities, this chicky included, are assumed to be the cause of breakups and are blamed for partners being disloyal or abusive.  We’ve been primed to feel as burdens, we are the ones doing all of the legwork, making all of the effort, and this couple stuff cannot survive if it is that one sided)…

 

In a perfect world, a relationship should feel like a safe place from which to explore, the world and each other (physically, sexually or platonically). The difficult stuff will always be along for the ride, but that’s part of being human, not specific to disability.  We should all be accommodating each other, everywhere.

So please, remember that we are people.  We have sex. We have pizza sex (even when it’s bad it’s still dinner), mediocre sex, great sex.  We have the same variety as ablebodied folks, and the only limits are our imaginations (and laws, but the same ones which apply to ablebodied people) and because of our different bodies we sometimes get a bit creative. Shouldn’t sex, ideally, be a dynamic, changeable beastie and with the right partner an adventure in communication, respect, decadence, pleasure?   Some of us have that. Some of us want that.  Some of us are happy as solo artists.  And that changes all of the time, just like *gasp* people without disabilities.

All of us, on this big ball of mud, have hearts and feelings and being disabled doesn’t make us saints, or sinners, it makes us human.  Treat us as such. And maybe we will continue to pretend we don’t see you staring when you think we aren’t looking.  But maybe you are just surprised that some of us are intensely sensual beings, and some of us are smokin’ hot too.

xo

B
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PS. Some friends have heard the following comments when people realize they are not only disabled but also have pleasure-seeking sex.

Q: But how do you get an erection?
A: Um, I’m not paralyzed and I’m not a dude.

Q: It’s selfish of you to have a child, what if that child is born with one limb like you?
A: I lost my leg in an industrial accident, you were there when it happened… I wasn’t born this way… *head desk*

Note: I am participating in BADD: Blogging Against Disablism Day!  For more blog entries by some very talented people, please head over to Diary of a Goldfish

pps. I will be covering Disablism/ableism and the side effects of sex, mainly parenthood and women’s rights soon. Promise.

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