Invisible Disabilities Quotes

I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn't really.

People who don't see you every day have a hard time understanding how on some days--good days--you can run three miles, but can barely walk across the parking lot on other days,' [my mom] said quietly.

I had learned quickly that life doesn't always go the way I want it to, and that's okay. I still plod on.

Sure, society understands visible shackles-- they get the symbolism of the wheelchair, of prosthetics, of a bumper sticker reading disabled veteran, but they still struggle for comprehension of the profound, invisible shackles that an illness such as [Chronic Fatigue] puts on a person's body.

I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding.

There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if not one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that's not always there?

I thought having a chronic illness would make my life detour in ways I didn't want to accept, but I've learnt that have a chronic illness made the only detours that are worth the growth.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

In my work, I’ve noticed that people with invisible illnesses or disabilities are scared of acting too positive because then people won’t believe that they’re sick. They’re afraid of being too negative because then they aren’t being strong or fighting hard enough. They can’t win.

A disability that is not apparent in the person’s appearance is no less intrusive, no less painful, no less disturbing than one that can be spotted across the room. And, yet, many people fail to respect the tremendous impact that the invisible disability has on the human enduring it.

His body had stopped listening to him. He'd passed an invisible limit and simply shut down.

The weekend was a much-needed breath of fresh air; Monday always seemed to not only take that breath right back, but add a few extra pounds to my shoulders as well.

If I only could explain how much I miss that precious moment when I was free from the shackles of chronic pain.

Finally, especially in the case of medical-response canines and those that serve handlers with invisible disabilities, it's not merely the necessity of the dog that's questioned but also the existance of the disability itself. And for these partnerships, some of the greatest problems arise.

Schizo. It didn't matter how many times Dr. Gill compared it to a disease or physical disability, it wasn't the same thing. It just wasn't. I had schizophrenia. If I saw two guys on the sidewalk, one in a wheelchair and one talking talking to himself, which would I rush to open a door for, and which would I cross the road to avoid?

It is a perfectly normal side-effect for someone to have depression because he cannot move or function in his job. That is all that it is: a side-effect. Those with disabilities and debilitating illnesses probably have more to get depressed about than others.

The video was still playing, although I didn't know why. It seemed as if the able-bodied dancers were mocking me.

What we need to make a more decent society is not a few Splendid Samaritans but millions of Minimally Decent Samaritans.

Unless we recognise that each individual is irrepeatable and valuable by virtue of simply being conceived human, we cannot begin to talk about human rights. This includes the right to be born, as all of us have enjoyed. True justice should be for each human being, visible and invisible, young and old, disabled and able, to enjoy fully their right to life. The accidental attributes that we acquire such as colour, sex intelligence, economic circumstances, physical or mental disability should not be used as an excuse to deprive a person of life.

My name is CRPS, or so they say But I actually go by; a few different names. I was once called causalgia, nearly 150 years ago And then I had a new name It was RSD, apparently so. I went by that name because the burn lived inside of me. Now I am called CRPS, because I have so much to say I struggle to be free. I don't have one symptom and this is where I change, I attack the home of where I live; with shooting/burning pains. Depression fills the mind of the body I belong, it starts to speak harsh to self, negativity growing strong. Then I start to annoy them; with the issues with sensitivity, You'd think the pain enough; but no, it wants to make you aware of its trembling disability. I silently make my move; but the screams are loud and clear, Because I enter your physical reality and you can't disappear. I confuse your thoughts; I contain apart of your memory, I cover your perspective, the fog makes it sometimes unbearable to see. I play with your temperature levels, I make you nervous all the time - I take away your independance and take away your pride. I stay with you by the day & I remind you by the night, I am an awful journey and you will struggle with this fight. Then there's a side to me; not many understand, I have the ability to heal and you can be my friend. Help yourself find the strength to fight me with all you have, because eventually I'll get tired of making you grow mad. It will take some time; remember I mainly live inside your brain, Curing me is hard work but I promise you, You can beat me if you feed love to my pain. Find the strength to carry on and feed the fears with light; hold on to the seat because, like I said, it's going to be a fight. But I hope to meet you, when your healthy and healed, & you will silenty say to me - I did this, I am cured is this real? That day could possibly come; closer than I want- After all I am a disease and im fighting for my spot. I won't deny from my medical angle, I am close to losing the " incurable " battle.

Right there was our catch-22: Because the country was so inaccessible, disabled people had a hard time getting out and doing things—which made us invisible. So we were easy to discount and ignore. Until institutions were forced to accommodate us we would remain locked out and invisible—and as long as we were locked out and invisible, no one would see our true force and would dismiss us.

Autoimmunity is internalized by patients as an opportunity for the ultimate self-management project. But in fact it is a manifestation of a flawed collective project. If it is an indictment of anything, it is an indictment not of our personhood but of our impulse to see social problems as being about our personhood, instead of a consequence of our collective shortcomings as co-citizens of this place and time.

He said that my problem was that I was perfectly healthy and had the illusion that I would be able bodied forever. I could only begin understanding his problem if I gave up that illusion and that would be very difficult, given how healthy I was. I understand, I mistakenly said, and he said no you don’t.

EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

Disability fluctuates, growing visible, then invisible, then visible again, becoming both ever-present and haunting. Such a problematizing of physical life added a new wrinkle to the genre's double/secret identity trope: the characters now interact with their shifting bodies as bodies with all the complications involved.

We do shit we're not supposed to do, when people are staring and when ableism makes us so invisible we could rob a bank and they'd miss it.

Dancing with a spinal cord injury is a challenge like no other, but I aspired to prove to myself that I could still be phenomenal dancer even with an SCI

Nobody listened. Nobody took any notice of Mrs Wilkins. She was the kind of person who is not noticed at parties. Her clothes, infested by thrift, made her practically invisible, her face was non-arresting, her conversation was reluctant, she was shy. And if one’s clothes and face and conversation are all negligible, though Mrs Wilkins – who recognised her disabilities – what, at parties, is there left of one?

The medical uncertainty compounds patients' own uncertainty. Because my unwellness did not take the form of a disease I understood, with a clear-cut list of symptoms and a course of treatment, even I at times interpreted it as a series of signs about my very existence. Initially, the illness seemed to be a condition that signified something deeply wrong with me⁠—illness as a kind of semaphore. Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again. It took years before I realized that the illness was not just my own; the silence around suffering was our society's pathology.

The new name 'Chronic Fatigue Syndrome' is far too benign. It trivialises. How seriously would you take something called 'Chronic Thirst Syndrome'? And yet, diabetes is a very serious condition. 'Disabling Fatigue and Immune Dysfunction Syndrome' does a bit better; while more research should allow something more specific. (Thompson, 1992:27)

First, a dial tone, followed by eleven rapid beeps from an invisible push-button telephone. This was followed by three or four high-pitched electronic whistles, collapsing into a longer whistle resembling the flatlining of a dying patient hooked to an EKG machine (this was the sound of the phone line’s echo suppression being disabled). There were a few more beeps absorbed into a wall of white noise, and then the white noise abruptly doubled, meaning the receiving modem was now interacting with the calling modem. There was an instant where it sounded like something inside the computer had broken, spontaneously repaired by the digital interplay of two probing modulators, similar in pitch to a metal detector passing over a pocket watch. This was bookended by another fleeting second of white noise, and then . . . silence.

Several years ago I was lecturing in British Columbia. Dr [Simon] Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS. He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians….His message was very clear and very simple. If I can paraphrase him: “M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow. The next morning I left by car with my crew and arrived in Kelowna British Columbia that afternoon. We were staying at a patient’s house who had severe M.E. with dysautanomia and was for all purposes bed ridden or house bound most of the day. That morning she had received a phone call from her insurance company in Toronto. (Toronto is approximately 2742 miles from Vancouver). The insurance call was as follows and again I paraphrase: “Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us”. That night I spoke to several patients or their spouses came up to me and told me they had received the same message. They were in understandable fear. What is important about this story is that at that meeting it was only Dr Wessely who was speaking out against M.E. and CFS and how … were the insurance companies in Toronto and elsewhere able to obtain this information and get back to the patients within a 24 hour period if Simon Wessely was not working for the insurance industry… I understand that it was also the insurance industry who paid for Dr Wessely’s trip to Vancouver.

For many of us with physical disabilities, the forest is often a dangerous place to be. There's no hope of taking a wheelchair into the trees unless there's a clearly marked and flattened path; it can be difficult to navigate a forest even with a guide dog at your side. I'd wager than the forest presents trouble perhaps even for those whose disabilities are often deemed invisible--it can be a dark place, filled with all manner of smells and sensory onslaughts, a place where even the able-bodied can lose themselves.

For better or worse, defensive designs limit the range of activities people can engage in. They can also create real problems for the elderly or disabled. Some of the goals of unpleasant designs can seem noble, but they follow a potentially dangerous logic with respect to public spaces. When supposed solutions address symptoms of a problem rather than the root causes, that problem is not solved but only pushed down the street to the next block or neighborhood. Spikes beget spikes, and targeted individuals are just moved around without addressing the underlying issues.

What the most advanced researchers and theoreticians in all of science now comprehend is that the Newtonian concept of a universe driven by mass force is out of touch with reality, for it fails to account for both observable phenomena and theoretical conundrums that can be explained only by quantum physics: A quantum view explains the success of small efforts quite differently. Acting locally allows us to be inside the movement and flow of the system, participating in all those complex events occurring simultaneously. We are more likely to be sensitive to the dynamics of this system, and thus more effective. However, changes in small places also affect the global system, not through incrementalism, but because every small system participates in an unbroken wholeness. Activities in one part of the whole create effects that appear in distant places. Because of these unseen connections, there is potential value in working anywhere in the system. We never know how our small activities will affect others through the invisible fabric of our connectedness. In what Wheatley calls “this exquisitely connected world,” the real engine of change is never “critical mass”; dramatic and systemic change always begins with “critical connections.”14 So by now the crux of our preliminary needs should be apparent. We must open our hearts to new beacons of Hope. We must expand our minds to new modes of thought. We must equip our hands with new methods of organizing. And we must build on all of the humanity-stretching movements of the past half century: the Montgomery Bus Boycott; the civil rights movement; the Free Speech movement; the anti–Vietnam War movement; the Asian American, Native American, and Chicano movements; the women’s movement; the gay and lesbian movement; the disability rights/pride movement; and the ecological and environmental justice movements. We must find ourselves amid the fifty million people who as activists or as supporters have engaged in the many-sided struggles to create the new democratic and life-affirming values that are needed to civilize U.S. society.

Another person posted this to the group Hashimoto’s 411: I can’t do this any more, I am beside myself and can’t stop crying. Today, I received a disability denial letter from Social Security stating that my condition is not severe enough to qualify. . . . I don’t know what to do, I feel like I am no longer living but just existing and miserable because I feel so sick. My unemployment extended benefits are going to run out and then we’ll be in big trouble if we can’t pay our bills, which include lots of medical bills because I don’t have insurance. I just don’t want to be here any more, and think my husband would be better off not having to deal with me, and with my life insurance he would be much better off financially.

These practical and cultural challenges are further complicated if the illness is too invisible or too conspicuous. Further still if it makes others uncomfortable or if it requires specialized equipment or rare expertise. The complications increase exponentially for those who do not have the emotional and financial support systems that I enjoy, those, for example, who navigate the labyrinthian regulations of federal disability programs, where funding can be stripped away for such missteps as finding someone you wish to marry or saving too much money. Our legal policies surrounding disability funding carry a clear message. If you need your civilization’s help to stay afloat while disabled, you must be careful to live in the abject poverty society feels you deserve or the help you need will be withheld. Such is our cultural love of billable productivity and our general disdain for everything else. It’s a concept that many of us internalize without a second thought. Our worth is our productivity.

Disability can create sensibility. My disability is invisible, my limitations are aesthetic. They make art and they make mistakes, reminding me constantly that the way I sense and experience the world is different. At a slight angle, as Forster said of Cavafy. Which is a reminder that difference isn't unique to me. That's why listening creates a conversation. That's how reading creates a poem. It's terrifying to lose your senses. Then, sometimes, it's a pleasure.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies.

A number of people I've interviewed have gently pointed out that a disability doesn't have to look like the one clean narrative we see in movies or on feel-good shows, the kind where a person using a wheelchair smiles and reassures everyone that she's fighting the good fight. We have these images in our heads of what disability looks like and what counts. But many of the women I have met have made me realize that disability is largely about the world's failure to make space for you--and that it can be connected to a combination of things your body does, or an invisible syndrome or disease, or a hard-to summarize history of surgeries. It need not be as two-dimensional as it looks on TV.

Language is a tricky thing, especially when we try to capture what's happening in our bodies and in our culture. Words like "health," "healthy," "sick," "illness," and "disability" are always relative and always loaded, rarely static, and often problematic. Words like "women," too. Our definitions are constantly in flux--as are, for instance, the laws that govern our rights. Whose bodies count?

If the plan succeeded, it would be a step to bring about the kind of golden age envisioned by Confucius millennia ago: “And then men would care for all elders as if they were their own parents, love all children as if they were their own children. The aged would grow old and die in security; the youthful would have opportunities to contribute and prosper; and children would grow up under the guidance and protection of all. Widows, orphans, the disabled, the diseased—everyone would be cared for and loved.

It was not just the disabled hikers' presence on the trail that garnered criticism, however, but the very idea that a backcountry cabin would be retrofitted with a wheelchair ramp and accessible bathroom. Challenging the need for the ramp, one reporter asked “why people in wheelchairs could drag themselves up the trail and not drag themselves up the steps to the hut?” If the hikers were able to complete such an arduous hike, in other words, surely they were capable of crawling up the steps to the cabin. This challenge to the appropriateness of the Galehead ramp exemplifies the ways in which nondisabled access is made invisible while disabled access is made hypervisible. Steps are themselves an accommodation, just one made for a different kind of body; as Jill Gravink notes, rather than focus on ramps as being out of place, the reporter could have just as easily focused on stairs, demanding of nondisabled hikers, “Why bother putting steps on the hut at all? Why not drag yourself in through a window?

Actions, words, and ideas can be ableist. In my experience, ableist ideas are not always premeditated or purposeful. They are part of the script we've been handed by a society not built for every body-mind. Thanks, Aristotle. Pervasive and invisible, ableism is so deeply woven into the fabric of our ideas about what is "normal" and "good" that we barely even notice it is there. Once you start to notice ableism, you will notice it everywhere. I do mean everywhere. It is difficult not to maintain ableist practices because they are so ingrained into our individualistic, "pull-yourself-up-by-your-bootstraps" society. Ableism is all around.

it was hard not to imbibe the message that the realities of disability have to stay hidden, even when the disability is the subject.

I want to stand on the table and scream that there is nothing wrong with me. But it won’t do any good.

We are constantly rediscovering the case for social insurance. That the market can’t provide genuine security against poverty, sickness, old age, and disability is something that is understood but not readily accepted

Sickness wasn’t sexy. And her disability was invisible—she wasn’t missing a limb or in a full-body cast. Her level of suffering seemed impossible for others to fathom.

Many invisible or less visible disabilities go unnoticed by people in their daily interactions because most people presume abledness in others.

What do we get out of people thinking we’re fine? I mean, I know I get threatening letters on our dashboard when we’re upstate and we park in a handicapped space. You get teachers who don’t believe you when you need a break, and people not giving up seats on the subway, and your dad thinking you’re fine. How would your life actually be harder if you looked sick?

Every belief, every word, every phrase, every observation, every proposition, every citation, every punctuation mark is subjected to ruthless doubt and viscious interrogation. The conventions of grammar oblige me to end most of these sentences with periods, but there are ghostly, invisible lines curling and hovering over most of these tiny dots. What I mean is that most of the periods in this book are interrogation marks in disguise. Most of these declarations are really restless questions underneath.

As per the terrorist narrative, the story of autism is told as a kind of 'spreading' pathology, infiltrating normative populations .. Knowing no borders or barriers, autism is framed as .. infiltrating homes, moving next door, and hiding in otherwise normative bodies. Figures of terror, in Bush's words, 'hide in the shadows' (Bush, 2001). Says the voice of autism in Cuaron's film [I am Autism]: they are 'invisible until it's too late' (Cuaron, 2009).

Arachnoiditis is the Queen of invisible disabilities

In the words of Black Lives Matter cofounder Alicia Garza, “Black Lives Matter affirms the lives of Black queer and trans folks, disabled folks, Black-undocumented folks, folks with records, women and all Black lives along the gender spectrum. It centers those that have been marginalized within Black liberation movements.

No one is talking about this invisible epidemic. Yet it’s the leading cause of disability, affects 1.1 billion people worldwide1—one in six children, one in two elderly—and will cripple one in four people during their lifetime.2 I am talking about the epidemic of broken brains. We refer to our “broken brains” by many names—depression, anxiety, memory loss, brain fog, attention deficit disorder or ADD, autism, and dementia to name a few.

There are plenty of hustles. Aside from welfare, there are various benefits, disability money, accumulated student aid, subsidies drawn off fictitious childbirths, all kinds of trafficking, and so many other means that arise with every mutation of control. It's not for us to defend them, or to install ourselves in these temporary shelters or to preserve them as a privilege for those in the know. The important thing is to cultivate and spread this necessary disposition towards fraud, and to share its innovations.