Defining Disabled.

This post has been brewing for some time now, but I have not had the brain power to write it. I am asking you to take five minutes (or longer, depending on how turbulent the brain fog is today) to read.

After seeing this Facebook post by a fellow Melbournian woman, I knew that I had to push past my own personal issues and write; that this was the time.

I remember the exact moment where my Gastroenterologist used myself and Disabled in the same sentence.
He spoke so freely.
There wasn’t a breath, there most certainly wasn’t a pause.
I expected a pause.
Please, allow me to absorb what you have just said before you keep talking Gastroenterological language.
It sounded a bit like “Blah blah blah, now that you are disabled we should apply for the Disability Pension, blah blah blah”.
I am sure my mouth was on the floor and I held up a finger to stop him, and said, “Now wait a minute Mr. I’m not disabled
He DID pause at this point and said, “Ah, yes you are, blah blah blah

Maybe it was my inability to accept that I was Chronically Ill, or maybe it was purely the naivety in me (which heavily consumes most of society), but at that very moment I did not want to believe that, nor could I understand how, I now defined as Disabled.

What is the first image that pops into your mind when you think of the word Disabled?
Majority of you would say this:

disabledlogo

because this is the image that defines a Disability worldwide.
It is plastered at every Shopping Centre Parking Bay, every toilet, it is on the permit of every car with a Disabled passenger or driver, and it is in every Government centre or office, every hospital, every Doctor’s Clinic.

I do not require a wheelchair, but this is the picture that I am bound to; this is the picture that now defines me.

The term Disabled being outlined as, “having a physical or mental condition that limits ones movement, sense, or activities“.

In the definition it is clearly stated that not only can the condition be physical or mental, but that it limits ones movement, sense or activities.
Here is a newsflash to the Government Departments Worldwide:
you have chosen an image that shelters sufferers of VISIBLE Disabilities, ie. special needs, those who use a wheelchair, walker or crutches as transport.

You are feeding the wrong message to society, or maybe it is in fact that your message needs an update.

You have separated sufferers and put us on scales of which Disease or Disability outshines the other, and apparently in order to qualify as Disabled, society believes that I have to physically look SICK and IMMOBILE.
You have put some of our heads as targets to be subjected to bullying.
Our illnesses and personal struggles are questioned, mimicked and misunderstood.

People walk down the street and see a person from crutches emerging from their car in a Disabled Permit Zone, and they think “oh, they’re Disabled”.

But what about sufferers like Justine? She parks her car in a Disabled Permit Zone (with a permit), tries to go about her day as normally as possible, and receives judgement from strangers behind a pen and notepaper.

What about the rest of the population suffering from illnesses that cannot be seen, and whom qualify for a Disability Pension or Permit to display?
What about the Cancer patient who has not lost their hair?
The MS patient who still has minimal mobility?
The sufferers of Fibromyalgia, POTS, Chronic Fatigue, Depression and Anxiety with symptoms that cannot be SEEN?
Or how about me, one of many sufferers of Gastroparesis?
You cannot SEE my Nausea (unless I am vomiting). You cannot see the Chronic Pain, Dizziness or Fatigue that accompanies my disease and confines me from partaking in a fulltime job or travelling independently.
I am sure that most of your symptoms also go unseen. We suffer silently or invisibly.

Society has been educated to assume that the ill, must look ill; that our exterior must match that of the Disability Symbol.
But this is far from the truth.
It is POSSIBLE for an illness to have stricken a body that is still very mobile and appears to relatively “normal” on the outside – a body that is young or old.
It is POSSIBLE to be chronically ill, but have days where you are feeling well enough to experience your day “normally”.
We might be able to walk on some days, you might see us exercising, you might see us driving.
This does NOT mean that we are not Disabled – it means that we are having a good day of health, and there is NO SHAME in that.

Please, do not take this post as an intention for me to discourage others.
I am one of you.
I am Chronically Ill.
I AM Disabled, but I am one of many who are tired of being judged based on my appearance and its relation to this symbol.
I am tired of having to explain myself and be compared to the world’s accepted view of a Disability.

The Government doesn’t just willingly hand out Disability Pensions to everyone that applies. We go through a gruelling application process, a handful of rejections, appointments, interviews, phone calls and not to mention, we are suffering enough day to day with our symptoms.
We don’t want the pension, we NEED it.
We would choose health every day, if it were possible.
We don’t want to be like this. I know myself, being twenty-three, I should be enjoying my life and instead I am stuck at appointments and fighting for a Government income to help pay for these appointments.

A Disability is a Disability.
There should be no further questions, right? But there ARE and that is why I am suggesting a change altogether.

The Disability symbol itself needs to be altered to something more accepting of all circumstances, or there needs to be a complete reinvent of a symbol for those suffering with Illnesses with symptoms that are not visible.
Think of words that describe us, but do not limit us to the image of a wheelchair?
Maybe we do not fall under the atypical “Disabled” category, and need a category of our own?
Perhaps a letter such a H (for Handicapped as it is a much more unified word), or I (for Illness) should be used on a sign as opposed or alongside the current one?

If you are reading this and can admit that you are one of the judgemental people above – the ones who wrongfully assume that in order to be Disabled, you must be in a wheelchair or visibly impaired – then you really need to make a change. Please think before you do something as pitiful and hurtful as above, based on another’s appearance.
How is it fair to bully, when you are unaware of one’s circumstances?
I can assure you that you would not like it if it were you, or a loved one being treated this way whilst being ill. So, what makes you think that we enjoy events like this one? It’s plain and simple, just don’t do it.

At the end of the day, this post won’t stop you from passing judgement and neither will the symbol.

But just let it be known that we (those suffering with Invisible and Chronic Illnesses) have braved more than your words and cruelty.

You might not think there are many of us, but we come in numbers, and we are stronger than your view of us.

 

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50 comments

  1. Really good read. I felt I could have practically written it myself–I have gp too, as a complication of Ehlers Danlos Syndrome. I eat the bare minimum, always nauseous-u know the story. The Disabled symbol/logo is very archaic, I agree. And I feel you on being Disabled. I couldn’t believe I was either!! But, I am. It’s hard. Hang tough, keep writing…we will find joy in the little things, that most people are too busy to notice. 🙂 💪🏽

    Liked by 2 people

  2. I think that, if you would put a ‘H’ or ‘I’ sign above a particular entrance at an airport for instance, people would become jalous of people whom the entrance was reserved for: I think they would see that as a ‘VIP’ treatment, whereas a wheelchair sign and -entrance makes more sense in this way that a wheelchair can’t be moved over just any path.

    Liked by 1 person

  3. I’m glad you wrote about this! I agree with you. So many people do not understand that not every disability or differently abled person differentiate. I understand why the person in a wheelchair sign does not apply to everyone! Plus there are many people in wheelchairs who have accomplished so much more then someone who is able to walk! The sign does not do justice to anyone. Maybe a sign with just a specific color? The sign tends to be white with a wheelchair bound person in light blue. How about just a light blue sign. Let the color speak for itself :). As for the judgmental people, there is no getting around that. Let’s just try to be strong enough to ignore their BS 😉.

    Liked by 2 people

  4. Bravo, Cass!! The treatment we often receive from the general public is one of my pet peeves. Why must people be cruel??!!!
    I am on disability and yes, the process to get the pittance that they offer is grueling. I have close friends who STILL doubt that I am sick as they only see me when I am having a “good” day. I must admit that when I go out, I try to look as normal as possible… I take the time to pull myself together. It’s a pride thing and perhaps I am shooting myself in the foot but I cling to normalcy as I try to convince myself that I can still carry on.
    Sadly, on the whole, there is a lack of kindness in this world. Thanks for writing this. Perhaps, one of the contributions we can still make in spite of our illnesses is to spread kindness?

    Liked by 2 people

    1. Me too Julie. But we should have to look “disabled” in order to receive that pension. We are sick. We are in some way owed the pension. It shouldn’t matter what we look like on the outside. We won’t all fall into the wheelchair category but sometimes I feel like I am expected to!
      Kindness spreading sounds good indeed ❤ hope today is a better day of health x

      Liked by 1 person

  5. I’m still getting used to my status too, as I have internalised all the thoughts about invisible illnesses like chronic pain somehow not counting in the same way. Thank you for reminding me this is not the case!

    Liked by 1 person

  6. Reblogged this on Fighting Back and commented:
    Another chronic illness sufferer spreading awareness… thanks, Cass!!
    It is time that our society understands the struggles of ALL who are disabled!
    Be kind for you know not what battles others are fighting….

    Liked by 1 person

  7. Before being diagnosed with Ulcerative Colitis, I had the same silent judgmental views, because you are right. We are initially made to believe that handicapped is based on what is seen to the eye. It’s obvious, right?!
    But, after dealing with an illness for the past three years that is unpredictable, painful, debilitating and only getting worse, it was a big slap of reality that not everything is kosher by the way one looks and moves on the outside. Now, I’m part of that line of people who suffers with what is known as an ‘invisible chronic illness’ and it makes sense.
    This is such a great post. Thank you for sharing.

    Liked by 1 person

    1. Thank you for sharing your story. If you’d like to connect further please search the “invisible illness” or “chronic illness” tag in the Reader bar and there will be so many other sufferers there!
      Lovely to hear from you and I hope that today is a better day of health x

      Liked by 1 person

  8. I totally agree with you. I’ve been judged and often live in fear of further judgement, because I’m young and have an invisible illness/disability. We shouldn’t have to justify ourselves to every random person who has no idea what it’s like to have your life swallowed by crushing daily symptoms. It’s also true that some of us with chronic illnesses have very different access needs then those in wheelchairs, which are not being met or even considered.

    Liked by 1 person

  9. I’m always exhausted by the amount of explaining I have to do. Some friends tell me I’m “too young” to be disabled – but, you know, tell my body that. Pretty sure if I could shed my body like a reptilian skin, I would, but I would never choose to live like this.

    Liked by 2 people

  10. Disability is not picking up over 10 kilos.it is needing the handicapped stall because you need the room to put your came, scooter, wheelchair. It is parking in handicapped parking because walking at all wears you out whether you look it or not. Finally it is feeling guilty when you use the facilities because of the judgemental butt heads who stare at you.

    Liked by 1 person

  11. As someone with bipolar, I completely agree with your post here. Not all disabilities can be seen and, as much as people may judge or disrespect people with visible disabilities, they also judge and disrespect people with non-visible disabilities as being lazy or not really disabled. Even in some cases where a mental health problem manifests physically (ie people actually “looking” unwell), people will pass their judgements on what constitutes real illness and what doesn’t. Usually those who have never had to experience it for themselves! I have a friend with Menieres disease, whichc can massively affect balance among many other things. I had labyrinthitis for two weeks, which mimics some of the symptoms, and after just two weeks in the shoes of a person with a lifelong condition I had at least some empathy and a desire to understand more. I don’t get why some people still think that being ill informed is an option.

    I don’t think I’m phrasing any of this well but basically just wanted to say yeah, gotcha, this makes sense.

    Liked by 1 person

  12. Years before I was Diagnosed and Put on Disability, i.e., back when I was living a normal life, I was hugely pregnant with my daughter, and my doc gave me permission for one of those hangtags, it being Christmas shopping season and this being Wisconsin, land of ice and snow. Falling just then could have been Bad.

    Some ass shook his fist at us and screamed obscenities because we didn’t have the *license plate*–I even waved the hangtag at him and he screamed, “That doesn’t count!” We put him down as “crazy person” and drove off, but not even having a visible “disability” was enough.

    Liked by 1 person

  13. This is a great post. I have just been diagnosed with POTS and am slowly coming to terms with the idea that this is not so much an illness as a disability. Originally, I was told I needed heart surgery. But at least then, I was being offered a solution. Now, although the diagnosis doesn’t sound as severe, there is no solution for it except to learn to live with it. I can definitely relate to your feeling of denial when being told that you are disabled. It’s just not the definition that we’ve all come to accept.

    Like

  14. Hi! I wandered over after you had somehow discovered my own blog and chose to follow me. Thanks!

    I had a pen and paper incident at my local Costco. This was before my illness became out there for the world to see, but the invisible side – cost me in energy, balance, and digestive problems. It meant always having to know at any point where the washroom was and how fast I could get there if the unfortunate should appear. The note was devastating for me. My doctor was the one who insisted I get that pass and use it, and she also made certain that my husband was clear that when I was travelling with him in the car I must use the pass.

    I admit before I had entered the sphere of chronic illness – I had no idea of the spectrum of invisible things that would necessitate a parking pass. I also didn’t judge really – I didn’t notice who was using the spots. I was oblivious. What I didn’t expect was the underbelly of parking politics when I did get sick with invisible issues. It never occurred to me that people actually took time to judge others based on what they couldn’t see. Until I was on the receiving end of that madness, I never realized what losing my health would cost me in defending my dignity.

    Now nobody questions why I need the pass.

    Powerful post.

    Liked by 2 people

    1. Welcome, and thank you for sharing.
      I too did not really think until i found myself in this mess.
      It is sad that we are now judged on our appearance and that nobody will truly understand unless they go through it!

      You, are my 1000th follower, so again, thank you (:
      xo

      Like

  15. The moment you speak of when the word “disabled” stunned you. That happened to me as well but with the word disease. All the tests came back positive and the Rheumatologist started referring to my issues as “my disease”. It was like I was slapped in the face.
    You know I have to admit before my diagnosis I didn’t even know what an invisible illness was, as I am sure is with most people. I think it is just a matter of education. But how do you educate everyone?

    Liked by 1 person

    1. Slap in the face is a perfect description of that feeling!

      Either did I. I have to be honest that I was one of the people that questioned the ill. I feel awful about it now, knowing what it is like.

      The only way I know how to is to keep writing, creating Facebook groups, sharing stories… get the ball rolling so maybe people come across them and begin to understand. But they won’t truly understand unless they have it themselves…..

      Liked by 1 person

      1. I was one too Cas, I judged… the ONLY good thing about RA is you can SEE when I hurt most of the time because I swell up and walk with a limp.. it would be harder if RA was completely invisible like other diseases.

        Liked by 1 person

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