Stopper Comments

Able Bodied Piece of shit.

 

How does this phrase make you feel? Roughed up? A bit threatened. A little angry… a lot defensive? And, finally……disassociated? That disassociation is the point of abandonment and it is what is hurting the disabled person in your life.

 

You may be preparing an argument I will never hear somewhere within yourself now. But I haven’t abandoned the disabled person in my life. I have stayed. I am here. I am one of the good ones.. You may be caring for a sick spouse or you may be looking after an adult son or daughter who is disabled. You may be office buddies with a cripple. You may be physically and socially present – but often times you abandon them on a much, much deeper level. What do I mean exactly?

 

Well, It is a phenomenon that is difficult for the disabled person being abandoned to explain and perhaps even more difficult for the abled bodied abandoner to comprehend. Let’s explore typical examples of every day scenarios that will light a fire under the ass of the angry cripple in your life and learn what a STOPPER comment is.

 

What is a STOPPER comment? Your able bodied day is busily humming along and you’ve got about a million and one things to do when suddenly everything threatens to come to a screeching halt as you are confronted by the beloved disabled person in your life complaining. Again. You half listen to what they say and then respond with SOMETHING. Anything to get them to stop.

 

The transaction ends with you moving about your amazing able bodied day that you totally take for granted because, stress, after taking a brief forgotten moment to tamp down your feelings of guilt and embarrassment. The disabled person in your life goes about their limited and far more challenging day feeling rejected, condescended to, misunderstood, angry and alone.

 

Anyone who issues a stopper comment must be a total able bodied piece of shit, right?

 

Well, no. Stopper comments come from a very complex and little understood place. And nearly every single person I’ve ever met who is not disabled does them. They can come from a place of good intentions, they can come from a place of panic, they can come from a place of hidden grief, they can and sometimes do come from a place of malice or selfishness. None of these motives are mutually exclusive of each other and feelings of social discomfort are the threads that stitch it all together.

 

You could be an absolutely amazing person and still be issuing these stopper comments to the disabled person in your life on a regular basis. You’re not a terrible person for doing it and I hope as you continue to read on that you will realize this is a safe space for you.

 

But this will not be a comfortable space.

 

It is fraught with confrontations, threats to your ego, and painful truths. You are not alone in your experiences and your reactions but I would advise that you be physically alone at your computer screen. Here there is no eye contact. There is no one to judge, no one to really ask for an immediate response from you. Your only job right now is to consume written words. What you do with them afterwards can be decided by you later, and is your own business.

 

For now, just read, and be willing to sit in this uncomfortable place.

 

The stopper comments come in many forms. Able bodied people frequently interrupt a disabled person to hastily tell them a story about another disabled person who’s makin’ the most of what they got. Like the quadriplegic woman who took a paintbrush between her teeth and was happy to paint the world’s most beautiful watercolor paintings you’ve ever seen. Or the guy whose body was just a torso but he never quit smiling! The dyslexic who became a millionaire entrepreneur. Or the woman you met ‘who has cerebral palsy but is the most positive upbeat person you’ve ever known”.

 

This is the ‘why don’t you quit complaining, get off your crippled ass, and do something brilliant to blow us all away‘ conversational play. And it will nearly always succeed in getting the cripple in your life to shut the fuck up. Imagine if you were complaining to a girlfriend about your nipples hurting after breastfeeding and the feedback you kept getting was a cheerful You know….. some women breast feed on the moon!”

 

You would be irritated as fuck and you would probably question that person’s grasp of reality.

 

Next, Imagine if you were at your job as foreman in a machine shop and you were trying to bring other people into a conversation about how to best handle a broken piece of equipment while still keeping the shop functional as a whole and every single one of your co workers were chiming in with things like ‘you know I heard about this guy who ran a CNC machine in India while fighting off man eating tigers and singing America’s national anthem because he just absolutely LOVED living his life!’

 

Well, fucking great.

 

You’d not only be feeling pretty raw about the whole experience on an emotional level, on a purely practical level you’ll now be left to deal with the plethora of problems stemming from the broken piece of equipment entirely on your own, because every else around you has decided to talk like they are INSANE. Maybe other people in your environment will be willing to do specific physical tasks that you delegate to them but the full brunt of responsibility to process the situation, generate possible solutions, and organize a response will rest now on you.

 

Now imagine you have a serious and limiting disability and you are asked to go this situation socially alone. That is enough to turn even the nicest person into a MAD CRIPPLE.

 

I will give you credit for wanting your disabled counterpart to have hope or to feel encouraged by stories of other disabled people accomplishing stuff. If you will give me the benefit of the doubt when I tell you that at least part of your motive for this brand of commentary is selfish:

 

what you really want to do is comfort yourself.

 

Disability is an uncomfortable and painful topic for everyone, you included. You make these types of comments to reassure yourself that everything is actually alright and that what is happening to the disabled person’s body is not the end of life as you know it.

 

It is a natural reaction.

 

Another genre of STOPPER comments are the ‘gee I’m totally clueless that you have a severe disability even though you’ve told me all about it ten thousand times’ variety. Like telling a person who is going insane on involuntary, medically-necessary-so-they-won’t-die, extended bed rest “oh god, you’re SOOO lucky!! I wish I could afford to just lay around and sleep all day”.

 

The person they’re talking to can’t actually afford to lay around and sleep all day. Their life is literally falling apart around them and everyone knows it. Mail is piling up, bills might be going unpaid, housing may be threatened, jobs are being lost, and friends are jumping ship. Both their future and their present are slipping away from them no matter how hard they fight. But the ‘oh I wish I could quit my job’ comments just keep on rolling in!

 

Why do things like this happen?

 

As I’ve been able to dissect and understand the process I believe that the first thing that happens when a disabled person complains is that the able bodied person feels immediately guilty for not being able to fix the whole life of the disabled person. You, the able bodied person, are not a magician – you can’t fix our legs, our neurological systems, our eyes, our immune systems ect. Apparently not even medical professionals with a life time of training and science can do that – otherwise we wouldn’t currently be complaining about things pertaining to being disabled.

 

When there is a glaring problem that can’t be fixed, everyone gets uncomfortable. And as a disabled person I tend to forget that and interpret it as either willful malice and neglect or a sign that the other person is pathetically weak. As disabled people, many of us have super powers that we rarely get credit for and that aren’t frequently discussed. Most of us aren’t consciously aware most of the time that we have this powerful tool set and that we are already using it on a daily basis.

 

It is the power to be emotionally and cognitively present for socially uncomfortable circumstances and a high tolerance for situations which have no clear, fast, or easy answer – if there is even an answer at all.

 

This is one thing that begins to balance the scales for me. On one side you have standardly able people with their awesome functioning bodies and their rich and hectic lives that they take totally for granted (yes, you). On the other side disabled people have an accumulation of the fruits of years or even a lifetime of intensive involuntary emotional, mental and spiritual labor. We are acclimated to dealing with things we did not choose. We have been forced to make friends with uncertainty and humiliation. We never got the choice to simply abandon the difficult topic of what happens when a human body fails.

 

I find that after 30 plus years of being severely disabled and socially isolated that I am by far more compassionate, more grounded, more realistic, more practical, more introspective and less at the whims of my emotions than my standardly abled counterparts. I handle crisis with more clarity. I make less go further in ways you would have to experience to begin to believe. And I know myself and other people inside and out. I have made peace with myself and the world around me and all of its infinite possibilities – I have lived every day knowing beyond a shadow of a doubt that, realistically, it could be my last. These things have made me strong.

 

Very strong.

 

Much stronger than my standardly abled counterparts. And because I didn’t recognize this strength as unusual, I took it for granted. I spent an extraordinarily long time in a very angry place because I failed to recognize that being really present for uncomfortable and painful circumstances is one area where standardly able people seem to be almost uniformly disabled.

 

Standardly abled people express this common discomfort in different ways. Some will avoid the topic all together which means either physically avoiding the disabled person or putting up an emotional/cognitive wall while remaining physically present. Others will get overly interested in ‘fixing’ the problem – but with no real expertise on the matter and without the correct tools to do so – they will inevitably make quick over simplified suggestions that will yield no practical success for the disabled person.

 

For example, my cerebrospinal fluid is blocked. I’m going to put this in layman’s terms: I AM FUCKED. There is no medical specialist who can help me. There is no surgery that isn’t dangerous and risky and, at this point in time, experimental and hard to obtain. There are no medications that can help me. MY WHOLE BODY IS FUCKED. A block in CSF screws over your whole nervous system and brain and,by extension, your whole body and life. Don’t bother asking me what’s broken on my body. It’d be far easier and faster to list what isn’t broken.

 

My eyelashes work just fine, thank you. Also, I feel confident in stating that my freckles are also fully functioning. If you’re thinking of one particular part of my body or one particular body function and wondering if it is affected and broken the answer is YES. Yes it is. And a whole slew of bodily functions you won’t even think of if you sit here for the next hour and try because apparently our bodies do a shit ton of stuff we take for granted every day… until they stop working.

 

My sweat is broken. My nails are thin and sharp and my skin gets so thin that my nails cut it often. My heart writes me hate mail every time I walk around, threatening to quit its job because I’m an asshole for not laying down. My tears don’t work. My saliva is a thick glue that seals my throat closed if I’m not careful. My ligaments are weak and I get injured doing stupid stuff like standing. My immune system is on strike. I have severe multiple chemical sensitivity to the point that going to the hospital to be confronted with various best guess medications and industrial strength disinfectants threatens my life more than just staying home and hoping for the best while my heart is pissed off at me for standing up to feed the cat.

 

I can’t regulate my body temperature – I’m not talking ‘oooh its chilly I should put on a sweater’ I’m talking ‘oh shit.. I was burning up and my face and ears were red and I was slurring my speech from the heat induced inflammation five minutes ago but now I’m freezing, my lips are turning a little blue and I can’t move because I’m so so freezing cold and it feels like there are knives stabbing me all over my body’ yet the temperature in the room has remained the same.

 

My poop is broken. No amount of laxatives or eating more fiber or dietary changes will fix that if your brain can’t communicat with the nerves in your colon because your CSF is blocked off and your body is a toxic soup.

 

Literally, everything is in disrepair – nothing is doing its job normally. Yet, despite this, I have many friends I’ve known for years who are quick to interrupt me and chime in with ‘I never have constipation! I eat lots of fiber! You should too!” or “You should take more vitamin B it gives you energy’ ….‘You should take echinacea it keeps me from getting the flu’ ‘have you tried setting an alarm so you don’t sleep as much?’ I try to explain to them for the zillionth time what is going on with me, that I have already tried cheap quick easy fix X, Y, and Z and that it has not worked.

 

They look at me as though I have betrayed them.

 

As though it is my fault that popping a few B vitamins will not fix 30 plus years of blocked CSF flow. They look at me like my crippled ass just took a week long shit in their corn flakes. I am being ‘negative’ again because I am not willing to cheerfully agree that taking X vitamin will probably fix me so I can then go back to fading into the background while they go on to focus on the beautiful able bodied life that they so take for granted.

 

It is disheartening and I am alone. I am alone in my bed with the echos of loves ones and acquaintances spewing sentiments like ‘mind over matter!‘ at my tattered, struggling body and I cry until I can collect myself enough to put my energy into figuring out how I’m going to solve my next challenge.

 

But why does it happen?

 

Abled person panic.

 

You are panicking. There is a sequence of cognitive events that get tripped off every single time an able bodied person is confronted with the problems or even the sight of a disabled person. This sequence of cognitive events is explosive and quick. It is SO fast that it is nearly impossible to comprehend inside of yourself while it is going on and it is a sequence of events that reels off in two different directions at once – occupying two distinctly separate yet linked parallel realities.

 

The first reality is the one in which you are basically a kind, caring, all around decent person who really just wants to help, and the second reality is the one in which you are being selfish in this moment and everything you do next is designed to shut down any threats to your own being. The two parallel realities run their course and converge now on the present moment.  The sequence ends with disassociation – emotional, intellectual and cognitive. You have abandoned again. Against your own will and without your consent your brain has left the situation.

 

These parallel lives you are triggered into living are whole worlds that open and close inside of your mind in a fraction of a second. You don’t see them. All you know is the shame and the guilt and the helplessness of having the disabled person in your life be angry with you. And you may be doing a great job at disassociating from that, much of the time.

 

 

Reality A: the one in which you really don’t mean to be an asshole
So your disabled counterpart has just said or done something that, in this moment, is causing you to be acutely aware of just how disabled they are, how limited his or her activities are, and how much pain they are in physically or emotionally. Your heart aches. You want to cry for them and all those getting ready to cry hormones start threatening to surge through your body. You feel a little sick. You wish you could do something. You abort the cry. You have to be strong for your disabled counterpart. You recognize that if it’s this hard for you it must be ten thousand times more difficult for them.

 

Your mind races as it combs through every life experience you’ve ever had trying to find some relevant piece of information. Something. Anything. Anything that will help this person. Anything that could lead to a cure, or even a temporary relief of any kind. But there is nothing. That is terrifying. There is no way to fix it. You are grieved for them. You are momentarily sick, even the insides of your veins taste like tears.

 

You live a million lifetimes in that single fraction of a second with your mind subconsciously cycling through ‘what can I do? nothing. what can I do? nothing? what can I do? nothing.” There is nothing you can do… expressing your grief over what is happening to this person’s body and life will surely add to their distress. So you’re forced to disassociate.

 

Reality B: the one in which your brain and body puts preservation of self first
So your disabled counterpart does or says something that causes you, in this moment, to become acutely aware of how limited they are or how much physical or emotional pain they are in. You panic. He mentioned loosing control of his bowels again. In your brain you encounter a mirror and when you peer into it you are the one loosing control of your bowels. Watching him go through this has made you aware of the reality that assholes don’t and can’t always hold back that river of shit.

 

You live a whole life inside of that split second imagining your life with one variation: you can’t control your bowels. The embarrassment, the anxiety, the fear, the partners you suspect will reject you, the grief. The lost jobs? Feeling dirty and helpless.

 

What else on a human body could fail? Hearts can fail. Lungs can fail. Teeth can fail. Skin can fail. Ligaments can fail. Eyes can fail. Ears can fail. Vaginas can fail. Brains can fail. Spinal cords can fail. Bone marrow can fail. Blood vessels can fail. Skin can fail. Immune systems can fail. eustachian tubes can fail.

 

Your subconscious brain starts to cycle through all of the varied and oddly specific ways a body could fail. Not just any body. YOUR BODY. It cycles through possibilities that you could never articulate to yourself or any one outside of yourself because science hasn’t yet began to scratch the surface of all the ways in which the human body could fail – but your brain absolutely understands all of the ways your body could fail.

 

It doesn’t need words, it is connected to every part of yourself and its understanding is intuitive and exists in a place without words. You feel it. The cycling. Viscerally. For each possibility of human body failure some minuet part of your brain, undiscovered yet by science, is creating and living an alternate reality in which that part of your body has in fact failed. This whole world, with all of its nuances and struggles and heartache and dangers, lives and dies in a fraction of a second. It is a culmination of life experiences, observation, and guesswork.

 

And feels dangerous.

 

You have, whether you realize it or not, just experienced countless lifetimes of body failure guesswork. The jobs you lost. The partner who didn’t choose you in that iteration because you were disabled. The daughter who you guess is dead in the alternate reality because your imaginary alternate reality disabled self couldn’t move fast enough to pull her back from the road that one time so she never went on to grow up and go to college.

 

The car you can’t drive. The trips you never took. Your whole current life at that moment seems to hang in the balance. As though consciously recognizing ‘yes….all of this could just as easily be happening to me’ might somehow throw your life into a downward spiral of body failure. It is not logical. You are the cartoon character walking off the cliff and hoping that if you never look down, you will never plummet to your death.

 

If bodies can fail, what can you do? Your mind begins to now cycle through this problem rapidly multiple times. If my body fails, what could I do? nothing. If my body fails, what could I do, nothing. If my body fails, what could I do, nothing.

 

It dawns on you that at some point, it will. For body failure finds us all, in some way, in some form, before our time here is done. Your body now threatens to release all kinds of fight or flight chemicals: there is danger here. Subconsciously realizing that you cannot remove yourself from the inevitable danger of body failure, you are forced to disassociate.

 

Here your two selves converge again as one. And you issue your STOPPER comment or you avoid the disabled person entirely. Leaving them alone, in spirit if not in body, to preform the every day emotional labor chores that go hand in hand with living life in a body with limited functioning.

 

I have good news for you today. You are not, in fact, a cartoon character and you will not seal your own fate simply by looking down and acknowledging it. Disabled people do this every second of every single day that we are disabled. A good many of us are still alive. In fact, I feel absolutely confident in telling you that I am alive and independent against all odds because I look.

 

I look every day.

 

I look when I don’t want to look and I look when it is painful. I look because the alternative to looking for me is dying. Looking feels triumphant when it brings about solutions. Looking feels pointless when it does not. At times I become apathetic but I always benefit from looking because without looking I could not navigate life in a body with severe limitations in a world full of dangers and problems to solve.

 

I look because I need to know exactly what I can’t do so I do not waste any of the few precious waking hours I have on solutions that don’t make sense and will never work within the reality that I’m given. I look every day because I am willing to fight for my life. And I live because of it.

 

Because I have confronted the test of looking, I am more equipped than you to live and I am more equipped to die when that time comes. I am more emotionally equipped to deal with all the challenges that come with each and I am an amazing companion to abled people going through their life’s challenges because I am able to sit still with them and handle the discomfort of witnessing someone else’s pain.

 

I can attest beyond a shadow of a doubt that looking does not kill you. It does not cause catastrophe and it will not weaken anything that you already have going in your favor. You are not preforming some feat of magic and willpower by tricking your body into not failing through the act of hiding the possibility of failure from yourself.

 

But you are limiting your ability to be a good companion to the disabled person in your life – and to EVERYONE in your life. You are probably limiting yourself in ways you can’t begin to imagine yet in your emotional, spiritual, social, and work life because you are limiting your ability to handle crisis in your life with grace and a cool head through your fear of really fully looking.

 

Once you take the brave step and begin to face your own fears of body failure, you will ultimately move past it to live a much richer and fuller life. One in which you will not take things for granted and you will not feel so alone. You’ll move forward not without fear but despite fear and you will be a fierce companion for all those you hold dear.  You and everyone around you will be happier and healthier because of it.

10.28.2019