You don’t have to say anything about it. It is something I have (mostly) come to terms with. I only bring it up to give a little context.

I have a father out there in Meat World somewhere. I differentiate for a reason, and no, I Don’t Want to Talk About It. We have met twice ever. Once I stayed with him, my former step-mother and two half brothers for a few weeks. Over the twenty years since then we have had few enough phone conversations, emails, and letters that I can count them on my fingers. I don’t need all of them. At least one hand’s worth are those initiated by me. Every now and again he would pop up in my life and make some n00bish attempt at contact with me. It never lasted.

Somewhere along the line I decided that I am worth more than a one-sided relationship. I don’t have the spoons or the emotional strength to give to something that is that unstable. I recently wrote him, laying out the terms I required of him if he wished to have any more contact with me or my family, and that if they were acceptable that he would write to me right away.

I wrote that letter a year and a half ago before we moved from Hawai’i.

I probably don’t have to say that I didn’t receive a reply.

It pained me for a while, until I realized why I made that decision.

I bring him up to make a point.

Because I need to focus my spoons on relationships that give as much as they take. I need to make sure that the relationships that I am working at putting my valuable spoons into are giving back to me. I deserve to be valued as much as I value. I deserve to know that the person whom I am spending my precious spoons on gives a fuck that those spoons have value and that a gesture like a phone call, email, mailed letter or card are not just something that I do offhandedly. Those gestures take time and physical resources on my part.

And I deserve to be a part of a relationship where the other party recognizes that, and can be arsed to give a little of that back.

Sure, I am not always the best at correspondence, but email, Facebook, and a few other electronic mediums have given me back a bit of that. I have managed to make contact with people that I love and care about, I have managed to forge new friendships, rekindle old ones, and build bonds that I need. And those people, who care anything about me have shown me that they can do the same. Those who don’t use these mediums call or write, and I feel appreciated or loved. I feel as if my spoons matter. I have even managed to connect with a sister that I didn’t know until recently, and it has meant something that I can’t describe. That is saying something for someone who works as a freelance writer, and who talks as a nervous habit.

I have made the conscious decision to conserve my spoons by moving past relationships that are one sided, and trying to recognize when I need to leave ones that I have grown out of, even if the other parties don’t recognize it, or won’t say so to me. By choosing not to spend my life resource on something that isn’t symbiotic, so to speak. I need to know that I am appreciated, and that my time and energy is acknowledged. I need the people who claim to care about me to acknowledge that my resources are limited, and that my energy is precious to me and my family. That a phone call, letter, card, email, or other means of my reaching out isn’t just a fun thing, but a tap on my limitations.

To some it might sound selfish.

But maybe, just maybe, it is time that I include a little selfishness just for me so that I can save those resources for the people that can be arsed to say “I acknowledge and appreciate you”.

We all deserve that.

Thoughts?

©2012 FWD/Forward. All Rights Reserved.

The mess in my apartment never goes away. We get this room clean, and that room clean, and the other, but rarely all at the same time. Even when we push to get everything in order, there is always something neglected — usually my mess in the second bedroom where I keep all my art supplies, strewn about, which I always promise to myself to organize but never get around to doing.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?

©2012 FWD/Forward. All Rights Reserved.

I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.

My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.

But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (“Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.

Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.

God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”

I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.

This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.

And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”

It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.

Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.

But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.

Which means you don’t get stronger. You get weaker.

“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.

Say, all you sick people out there: does any of this sound familiar?

Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?

But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.

Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?

Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.

When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.

It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.

Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not

scary,

or

unknown,

but

opportunity.

©2012 FWD/Forward. All Rights Reserved.

This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.

Becoming Sick

I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn’t concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn’t pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I’d walk a couple of blocks then flump down absolutely exhausted. This was the first time I’d ever felt like this, and it didn’t make any sense! I felt happy enough, apart from being terrified that there was something awful wrong with me (lupus and MS were high on the differential at the time); there were no clinical signs of depression or somatisation.

This didn’t stop the first specialist I went to, a neurologist, insisting that I must must must be depressed, of course. I was a woman. With a toddler. Of course I was depressed! Just deluded and in denial, as hysterical women so often are. The abnormal blood tests and lack of clinical signs didn’t register in this simple equation: ovaries + fatigue = probably depression. Ovaries + fatigue + motherhood = certain depression.

Thankfully, I got past that, though not without a fair bit of righteous annoyance on my part. Depression would have been just fine by me as a diagnosis. I know how depression is treated. I know it can usually be managed, if not cured. I don’t feel a stigma about it; let’s face it, many, perhaps even most, of my close friends have had depression. But it’s a positive diagnosis, not a wastebasket one. Lesson one: no clinical signs of depression means no depression, people.

I found a GP with a clue, and stuck with her, so happily I’m not without competent, non-judgemental medical care. Sadly, not all people with CFS are in that position.

Discovering Spoon Theory

I first learned about spoon theory when I was poking around reading up about lupus. Christine Miserandino, a person with lupus, was trying to answer a question by her friend. The friend had asked her what it was like being sick – not about her symptoms, but about what it was like being her. Stuck for a metaphor, Christine grabbed all the spoons off the table, and explained that every day, she had a very limited number of spoons, unlike a healthy person who has a near-unlimited spoon supply. Each spoon stood for one chunk of activity. The friend started out with 12 spoons, and had to run through a day, giving up one spoon for every thing she did: including getting up, dressing, showering, and so on. The friend was down to half her spoons before she’d got to work in the morning – and the light dawned. It dawned for me, too.

Every day, every moment, is a tradeoff. Every piece of activity has to be a conscious choice. Normals never have to choose between cooking and cleaning up, between showering and playing with their kid. Never have to think ahead to the weekend, and say “I’m having lunch with a friend on Saturday, so I have to keep Sunday completely free to recover.” Spoons are always my first thought when planning out my life.

An example: Today I changed the bedding. That’s a fair chunk of spoons. I started planning it a couple of days ago, when I knew the bedsheets had to be changed. I have learned from experience that on a bedsheet-changing day, I’m not going to be able to get much other vertical time once essentials are accounted for (personal grooming, lunch, picking my kid up from school). I figured Friday would be a good day. We could have our weekly takeaway dinner, so I’d be able to steal the cooking spoons. And Friday Night is Movie Night for the Lad, so our evening will consist of hanging around on the bed, watching something with dinosaurs and munching popcorn, a low-spoon activity. I also checked forward to our Saturday plans: no excursions, so I can use up all my spoons on Friday instead of keeping some in reserve.

So I planned a couple of days in advance; I just changed the sheets; and now I’m horizontal. And wondering, just a little, how I’m going to get the energy to do school pickup today – maybe I’ll drive the block to school to save those couple of spoons for tonight? I’m not sure yet.

I used to spontaneously say “Oh, I’ll just quickly change the sheets now”, somewhere between getting home from work and going out for a night on the town. No more. Life has changed. It’s taken me two and a half years of being sick to get to this point of juggling my spoons relatively effectively. As recently as six or eight months ago, I was still on the push-crash roller-coaster, using up all my energy on one activity without thinking forward to the next, and spending days on end crashed out from not pacing thoughtfully.

Some people who have never been through this view the spoon-rationing as “giving in” to the illness. I guess these are the same people who subscribe to the contorted, fucked-up cognitive-behavioural causality model of CFS: they think that I’m sick because I’ve convinced myself that I’m sick, and that I have limits simply because I’m spending my hours and my days working within my limits. What they didn’t see was the many months I spent denying that I had limits, busting them, and paying out for it. What they are looking at now is survival, not surrender. I’m gleaning the positives from an unpleasant situation; I’m eking out a life both happy and worthwhile, from the boundaries I’m stuck with – just like anyone else on this planet does. I don’t need pity, but I do need consideration.

Two Things To Understand About Me

Before I leave Useful CFS Links, I want to drop you another link: the Open Letter to Those Without CFS/Fibro. A couple of these “Please understand”s really resonate with me:

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

Contemplating Disability: What Counts?

The line between “chronic illness” and “disability” is a blurry, wobbly, contested one. Many people seem to think that “disability” is about having a mobility impairment and using a visible mobility aid. People in wheelchairs “count” as disabled; people with invisible disabilities don’t. Some people consider “disability” to be something a person was born with, or acquired catastrophically and traumatically. Considering the idea that I’m disabled has been a difficult one for me. Though I’ve worked hard on combatting cultural devaluation and misunderstanding of disability and disabled people when it comes to others, for some reason turning the disability light on myself has been a challenging step. It took me nearly two years of being sick before I applied for a disabled parking permit, and I cried at the doctor’s appointment getting the parking medical form filled in. I might intellectually know that it’s not “surrender” to accept the D-word, but gosh, it feels like it. Why?

Passing

So I pass. Most of the time, I pass. I’ve used the parking permit maybe four times, because I don’t want people looking at me, staring because I’m not in a wheelchair, conspicuously inspecting my car looking for a placard, heckling me and asking what my diagnosis is, just as that TV current affairs show encouraged them to do last year.

I go to social events, and pass. Sometimes. There are some places I just can’t go, if there’s nowhere comfortable to sit or lie down, or if there’s no hard shade (I’m sun-sensitive). I find a chair or a picnic rug, and sit, and chat, and Don’t Mention The Illness. People I don’t know see me sitting still and asking friends or family to bring me a drink or fetch me something I need, and I worry about them wondering why I’m so imperious and lazy. But I work hard on not caring.

Passing is exhausting. So is disclosing, coming out. It all uses emotional energy – “Will they think I’m faking?” “What words will I use to explain?” “What if they don’t believe me?”

Invisible Accessibility for Invisible Disabilities

The first time I truly realised how clueless people are about disability and access was at a local Apple dealer. We needed to do a bit of paperwork, and I found myself standing at a desk, with the computer guy seated on their other side of the desk. I looked around for a chair, and couldn’t find one. I asked “Could I have a chair, please?”, and was told that they don’t have any chairs for customers. “I’m not feeling well,” I said, “Could I please have a chair while we do this paperwork?” and was again rebuffed. “This isn’t great disability access”, I tell the dealer. He looked at me as though I had two heads, and snapped, “Disabled people bring their own chairs.” I explained that not all people with disabilities use wheelchairs. I was then subjected to a lecture about how sometimes disability is all in people’s heads, and if only they would get out and about more, they wouldn’t have a problem. What an monumental arsehole.

I’ve spent the last nine years getting a Bachelor of Arts degree. The last two years I’ve done in off-campus mode, though my university doesn’t officially provide such a mode. This is thanks to several absolutely fantastic lecturers who were happy to work with me, discussing tutorial material by email, accepting emailed PDF assignments, allowing flexible deadlines. I thank those people deeply. And the lecturers who snarkily refused to contemplate flexible delivery can nick orf. I thank my wonderful partner, who fetched and carried the books, videos and paperthings that couldn’t be transferred electronically. I thank the librarian aide who helped me out with items for pickup, and I thank the Student Services Office, who somehow find their way around the convoluted university systems.

Most of the time.

Between going into off-campus mode, I spent a short while being sick but attending classes. This was before I got my ACROD permit, so I needed to apply for a university disability parking permit and library accessibility pass. The application system was so ridiculous as to be laughable, and my feedback about the system, as far as I know, was icily received and promptly ignored. I present it here for your amusement: How To Get A Uni Parking Permit, for People With Chronic Illnesses And Mobility Disabilities.

(Background information: the campus is fairly spread out, about a kilometre from end to end. This is taking place before I have a permit, so I can’t park close to the buildings and offices.) We started at Student Services, not too far from the south end of campus. Having made this appointment specifically to get the access passes, I thought I was going to just sign something and pick them up. I don’t have a huge number of spoons this day, and just driving to uni has been pretty tiring. But no. I meet the Disability Officer, and she says a couple of things, then says we need to go up to the Parking Office. At the north end of campus. “What?” I say. She says “We need to go up to the parking office.” “What the fuck?” I am tempted to reply, but I end up just doing the two-heads-stare. She twigs, and says, “Oh, you can drive, I’ll walk and meet you there.” So I make my way back to my car, and drive up to the Parking Office, try to find a space (paid only, for non permit holders), and go to the office. There’s no seating, no low counter; you must stand at a high counter to get served. Exhausted, I sit down on the floor while waiting, and bystanders start backing away from the crazy person. Getting up, when the time comes, is a struggle. The parking permit is sorted.

I’m wondering, at this point, what happens with the library permit. “Off we go”, she says, “We need to go to the library now.” I take a breath, steel myself, and drive back down to the library, in the middle of the campus. Parking is a fair way from the library entrance, and there is a large flight of stairs to get up. Ramp access to the library for non-permit-holders is around the other side of the huge building, and I don’t have the energy to walk around there. So I wait, again with no seating, outside the locked disability access entrance for the Officer. We meet, and go in. There’s a service counter on the library ground floor where they dispense disability access cards. You guessed it: no seating, and a high counter, standing room only. I ask for a chair, and the service person disinterestedly points me to a corner of the next room where there is a stack of chairs. I am in spoon deficit by now, and have a choice to make: do I stand at the counter, or do I go and get the freakin’ chair myself, so I can sit? I don’t even have the energy to go into an explanation of why there should be seating, and how completely inappropriate it is to tell someone at a DISABILITY SERVICE COUNTER to get their own damn chair. I get the chair, and slump down onto it. There is a wait, and eventually a card eventuates that gives me access to the locked elevator system in the library, and the library room with disability facilities in it, including various bits of accessibility equipment, comfy chairs, and a mattress to lie on.

I have a point, I think, to all this rambling, and that is: Stop and think. Use your brain. Encourage people around you to use theirs. Get past the wheelchair model of disability access. Just as people who use wheelchairs shouldn’t have to go to the back of a building and use a freight elevator, people with invisible disabilities need to be considered when planning buildings, access, and service provision. People with invisible disabilities should have equal access BY DEFAULT, and not have to spend their time constantly educating people about their illness in order to get through the day. Businesses need to do some basic staff training about the variety of invisible disabilities. Consider the whole range of somatic, sensory, and neurological issues and atypicalities, from CFS to cancer to dyslexia to deafness to autism to mental illnesses. Different people have different access needs; mine are really very simple, and start with access and seating. Don’t lock the elevator. Don’t make people walk the long way around to get to an elevator or escalator. Put in lots of chairs, benches, a low service counter for chairs and wheelchairs and little people, install an armchair in a corner for people to take a moment. This goes a long, long way to letting an ill person access your facilities.

Oh, and don’t tell them it’s all in their head.

©2012 FWD/Forward. All Rights Reserved.