disability fear

Standards and Fear

 This world that we live in loves to set standards. Many of these standards are constantly morphing and even changing entirely into a new set of standards. But there are some however, that have never changed. While I could rant on and on about these ridiculous set of rules that society creates, there is one tonight that weighs heavily on my heart. A cripple, a mute, a learning disorder. A condition, an illness. Deaf, blind, or disfigured. Even the elderly. All of these people are rounded up by society, like animals in a zoo, being observed and gawked at. Tell me, when you pass by someone in the supermarket who sits in a wheelchair, what is your reaction? Do you give them an apologetic smile as you step aside? Do you make eye contact and try your hardest to act “normal”, or do you even go as far as acting as though they are not there. Perhaps you feel that if you acknowledge their existence, they will feel embarrassed, even humiliated. But then…maybe you are the embarrassed one.
    My little sister is a free spirit, to say the least. While she was taking mud baths in the heat of summer, I was the one buried in books and art and things of that sort. She is the risk-taker, the bold one. Not only has she endured three major surgeries that have confined her wild heart to a wheel chair each time, she took it with a smile all three times. Now, my sister who’s wild heart was confined to a constant state of stillness, was presented with a great deal of time alone with her thoughts. Many of those thoughts that she shared had to do with her frustration involving the way people-the general public- were treating her because of the fact she was in a wheelchair. “They get so awkward, like they feel bad for me and don’t want to look at me,” she would say irritated, “I wish they would just treat me like a normal person.” They next time we went out, I watched, and to find that my younger sister was absolutely right. People’s reactions varied between two different extremes. One of these extremes was obvious eye contact, but in a condescending way. A look that said “I’m so sorry that you are the way you are.” And the other extreme being, obviously, the attitude that she was not ever there in the first place. Despite the maddening looks or lack there of, she pulled through those times of confinement time after time, and it never ceased to amaze me.
    Now, several months later she was back on her feet again, but she had an accident and broke her arm (no one was surprised really). She chose the brightest, neon pink cast that she could choose. I still remember how she strutted out of the doctors office like she was on top of the world; as though she had forgotten that she had just broken her arm. Later on in the week my family took a trip to the mall, and I decided to observe the way people treated my sister this time. What I saw fascinated and disturbed me at the same time. Everywhere we went, she received warm, sympathetic smiles, and many times questions about what happened. Never in a million years would someone have asked her what happened when she was in her wheelchair. But this time, no one gave it a second thought. Why?
    I came to the conclusion that we as humans, are afraid of permanence when it comes to our physical abilities or looks. When my sister was being wheeled around with a blanket draped over her legs, it seemed to others that her disability was permanent, for life, and to ask would be sensitive or rude. In my opinion this is an excuse to cover up our fear of breaking away from the worlds standards. When Macy sported her flamboyant pink cast, fear never played a factor, because people know that it will eventually come off, and all will be well.
     I strongly dislike the word “disability”, because it suggests that a person is weak in every way. Perhaps  they are weak according to the world, but their souls and hearts would tell you otherwise, if you took a peek inside. Have you ever met an autistic child? Those children know a joy that those who do not have autism never will. They feel emotion so deeply, and their laughter is one of the most beautiful sounds I have ever heard. Those who cannot hear sounds, see like those who can hear never will. The soft breeze of spring, and the first snowflake falling from the sky speak only to the blind. The paralyzed dance through life in their own lovely way. These people are called weak, and unable, but to me, they are the strongest of us all. The obstacles that they face, and the daunting challenges they endure are endless, yet they continue to give to the world and enrich it. They see the world in a way I never will be able to, and the things that can be learned from them are endless. God has given us all a purpose, he knows each person in a way more intimate than we can even fathom. I believe that what this world sees as a disability, God sees as an asset, a gift. Those that have this gift are so immensely strong, and so uniquely equipped to adorn our tired world with pockets of pure joy.
    So again, we are brought to the question why? Why do we feel pity for those who do not meet the standards of this world? Who are we to define what is weak, and what is not? I do not intend for my words to be accusing, because we are all guilty of submitting to the fear of being different. I do however, intend to push you towards changing the way you think about these standards that we are so constantly and tirelessly exposed to. Why live in fear, when you could be who you are truly created to be and instead revel in the person that God has made you. Never has there been one like you, and never will there be, so why not step out of those confining standards and push the limits of greatness?

its so important to have disabled presence in children’s media, disabled kids grow up with really harmful messages about being burdens, ugly and unwanted and that needs to be challenged, we need to be showing disabled kids that they’re valued and amazing

like I remember a few years ago here in the UK, there was a disabled woman, Cerrie Burnell, who’s right arm ends a little past her elbow, who did some presenting on kids tv and parents wrote in and complained about her and said she was scary for children and shouldn’t be there because she was disabled

children are seen as being needed to be sheltered from the ~terrifying~ and ~horrifying~ reality of disabled people and that really hurts disabled kids and also massively contributes to adults hating and fearing disabled people since that’s what they were taught to do as kids

whether it’s disabled presenters or disabled characters, children’s media has to do more to acknowledge and celebrate disabled people

2

I have no more words anymore. One of the worst attacks and mass murders committed in Japan, and it was committed against the disabled.

Everyone just wants us dead. To vanish. Anywhere we are. Even the people who are hired to help take care of us. Even our families. Anywhere in the world it seems.

My heart however goes out to the people in Japan who will be suffering, and living in fear. Disabled people who will be afraid of leaving their houses. Of people who will be grieving so much.

Repeat with me:

Today will be a good day.
Tomorrow will be even better.
This week will be great.
Every day this week will be fantastic.
This month will be amazing.
This year is MY year and it will be spectacular.

Because I deserve it,
Because I will make it so,
And because I won’t allow my fears,
Illnesses, disabilities, toxic thoughts,
And mean people bring me down.

I am the commander of my life.
The ruler of my moods, of my emotions and
Feelings. I will win against all odds and
Smile while doing it.

*I love you, remember you are awesome*

Tagged by @farminglesbian– thanks for thinking of me <3

Rules: Copy this post into a new text post, remove my answers and put in yours, and when you are done tag people and also tag the person who tagged you… and most importantly, have fun!

Tagging: @carol1st, @theoriginalplant, @jogoraz, or whoever want to do this.

a - age: 51 (in a month or so I’ll be 52)

b - biggest fear: becoming disabled

c - current time: tuesday, 9:16

d - drink you last had: a glass of milk

e - every day starts with: turn off the alarm, wake up my wife, scratch some dogs’ bellies, go to the bathroom

f - favorite song: hundreds. Today I woke up with a very old song: Devuélveme el rosario de mi madre, Maria Dolores Pradera version, best divorce song ever. Most sung last week: Copenhage by Vetusta Morla, Nocturnos de la Ventana by Ana Belén (obsessively), Unas veces se gana y otras se pierde by Amaral.

g - ghosts, are they real: Of course not.

h - hometown: Madrid

i - in love with: mi wife

j - jealous of: nobody, except the very talented for painting, singing, writing or the very talented in general (I said nobody? This is a lot a people, but not rellay, not really jealous of anyone)

k - killed someone: Insects. No regrets.

l - last time you cried: When my aunt died some months ago.

m - middle name: I don’t have a middle name.

n - number of siblings: 1

o - one wish: be free of serious illness

p - person you last called/texted: my wife

q - questions you’re always asked: Lately, a lot of things about my next early retirement.

r - reasons to smile: I’m happy, I’ll retire in a year and some months, the best woman in the world (for me) loves me, I love her back, our dogs, my life in general…

s - song last sang: Devuélveme el rosario de mi madre. As I said, I woke up with this in my mind and cannot get it out. I’ve been singing it the entire morning

t - time you woke up: 5:31

u - underwear color: Today, orange and pink stripes.

v- vacation destination: Dreamt: anywhere in the world. Last year: Hamburg

x - x-rays you’ve had: All of my body has been x-rayed at some point, except the head. Today in the afternoon I’ll get some beautiful inner photos of my feet.

y - your favorite food: Not sure. Maybe croquetas, or tortilla de patata, or jamón ibérico or…a lot of different dishes.

z - zodiac sign: I don’t believe in these kind of things.

They asked me what takes too long. I knew my answer without second thought.

Letting people in and discovering if they’re truly worth the value of your time.
Of course you learn from every situation, but disabling the internal fear of somebody seeing you for all that you are is almost a dreaded experience.
How nice would it be to no longer care about opinions of others,
to let them in willingly without hesitation or any issue
And for them to offer you the same respect you offer them?
Discovering takes far too long, whether it be for a brief period with someone or an eternity.

—  ARH // To My Future, please be better at this
2

Getting over fears is not as scary as you think! :-)

Importance of getting over fears - Being able to conquer your fears gives you a sense of confidence, motivation, productivity, satisfaction, pride, and it empowers you to do bigger things. You grow with each fear you conquer and you realize you have a lot of potential in you that you never knew you had. You may even procrastinate less because you get over the dread and fear of big projects and studying. And it’s not the end result that makes you proud, it’s all about the effort and mental strength you put in along the way that’s rewarding.  

1 | Realize how much power you’ve given to your fear - The first step is to realize you actually want to conquer them instead of allowing them to set limits on how you live. Fear is disabling, but it doesn’t have to be. Think about how your fears prevent you from doing something you actually want to do. For example, I used to be afraid of turning on gas stoves and I couldn’t cook meals as conveniently in college like everyone else because of it. I hated it, accepted it, and thought there was just no way around that fear. However, I realized that you have to learn to control the fear instead of letting it control you. Set each fear you want to get over as a goal to accomplish. Make a list and make the effort to cross them off.  But how do you gain the courage to “just do it”? (tip: saying “YOLO” actually does help a little, or things like “TODAY’S THE DAY, FOLKS” when you feel like making it happen.)

2 | Change the way you think about the fear – Fear is all in your mindset. In my psych classes, I learned about cognitive therapy and how it aims to change distorted thinking and alter behavior. I connected that type of therapy to how we think about fears and how it negatively affects our behaviors. Phobias are irrational so it helps to change that thinking into something more rational by reminding yourself of more realistic thoughts. For my gas stove fear, I repeatedly told myself that I’ve seen my housemates turn it on a hundred times and nothing ever goes wrong when they do it. When I feared dogs, I repeatedly reminded myself that they won’t hurt me because the dogs seemed fine around other people. And if your own words don’t help you, I have found quotes (mostly on tumblr) to be extremely helpful tips/advice/wisdom in making me change my point of view on fear. Write them down, put them on your wall, have a collection of them on your blog, or just keep them in mind.  

Here are my top favorites that I found most helpful.

“If you can’t beat fear, then just do it scared.” – Glennon D. Melton

“So please ask yourself: What would I do if I weren’t afraid? And then go do it.” – Sheryl Sandberg

“I want to get more comfortable being uncomfortable. I want to get more confident being uncertain. I don’t want to shrink back just because something isn’t easy. I want to push back, and make more room in the area between I can’t and I can.” – Kristin Armstrong

3 | Baby steps - Face fears gradually and in small doses. A helpful phrase I learned in my psychology classes is “systematic desensitization,” which is basically a way of progressively exposing yourself to what you’re scared of and learning to relax and get used to your phobia. Here’s how it helped me personally. My fear of dogs has kept me out of my friends’ houses for a very long time and one day I decided to just step in. Of course, that involved a lot of anxiety. Usually, if I got anxious, I would just leave within the first 5 minutes. However, for once, I let myself stay there until I got calm, which took about 15 minutes before I was able to be okay in the same room as the dog. I saw that the dog was no threat to my personal safety, but I still was scared to touch it. My friend helped me hold onto the dog so it wouldn’t make sudden movements and told me to just touch it with one finger, and I did. A few minutes later, I was able to use my entire hand to pet the dog, and then within an hour, I grew to really like this specific dog. One year later, I’m extremely fond of big, fluffy dogs, but mostly because I was so proud of myself for facing that fear. I’m still working on getting comfortable with smaller dogs and other animals, but I’ve come a long way! Anxiety is no joke, I get it, and it’s tougher for some than others, so only push yourself a little bit at a time & at a pace you’re comfortable with There are days where you’re simply not ready to take on a fear, and that’s okay! It’s always okay to take it slow!

4 | Keep track of your progress, failures, and successes - Writing down your fears as goals, identifying why you’re scared, and developing a plan to work on that fear helps improve the chances of you actually completing them and trust me, it’s gratifying to reflect on how far you’ve come and how much you’ve changed. It’s all up to you on whether you want to record your progress in a bullet journal, a diary, a blog, or just a sticky note, but having it down somewhere is key!  I received a copy of Do One Thing Every Day That Scares You by Robie Rogge as a gift this year. It’s a cute little journal that has a lot of helpful quotes and room on each page to write down the date you did something scary and what scary thing you did. It’s definitely worth checking out! I don’t write in it every day, but I do write in it every time I conquered a fear, whether big or small, and I love looking back at how many pages I’ve filled out and how I can’t wait to add more milestones to my journal.

5 | The biggest fear to work on is the fear of getting over fears -  Once you’re not scared to conquer fears, then you’ve become truly fearless in any challenge. And to do so, you just have to do it. Each fear you get over accumulates in developing stronger, more open, and confident mindset and positively redefines who you are! You are capable and you have the potential!  

“Try a thing you haven’t done three times. Once, to get over the fear of doing it. Twice, to learn how to do it. And a third time to figure out whether you like it or not.” - Virgil Thomson  

Disclaimer: These tips might not be for everyone, but they worked for me, so I hope it helps others grow too! :-)  I understand that working on things that give you anxiety is not easy, so this post is not to say you can brush fears off like it’s a piece of cake because it’s really not that simple, or else I wouldn’t have spent 20 years of my life being afraid of twenty gazillion things. People are works in progress and hopefully this post motivates you to make some progress, even if it’s just a little!

Positive or even neutral portrayals of disability

Are rare. If I wanted to boycott every single book, movie or show that used disability as a trope for abled people’s amusement without any commitment to accuracy or to our dignity, I would have almost no representation of disability left.

I don’t mean to sound whiny, but I feel particularly sensitive to it lately. Casual ableism is extremely common and it is exhausting to deal with, especially from friends and family. But it also infects my escapism and I hate it. There’s barely any IP that doesn’t use disabled characters to induce fear, pity or laughter, if it represents us at all.  Editing out the ableist slurs and ignoring the lack of depth, care and understanding that even my favorite media exhibit towards disability is taxing. Trying to correct painful stereotypes and outright misinformation is draining me.

I’m having trouble relaxing.

When fear of wheelchairs is really fear of institutionalization

Journalists sometimes inappropriately describe wheelchair users as “wheelchair-bound”. This is offensive, because it’s misleadingly negative. Wheelchairs aren’t a restriction, they’re a liberation. They make it possible to go places and do things, and to move through the world without needing someone else’s permission. Wheelchairs are absolutely amazing and should be viewed as positive.

Except — in institutions, wheelchairs are routinely used as restraints. (And sometimes instruments of humiliation and torture). And I think that is probably a factor in why many people find wheelchairs frightening.

Walk through the hall of any nursing home, and you’ll see people parked in clunky manual wheelchairs that they aren’t able to self-propel. (And which don’t fit properly, don’t have good positioning support, and can be very painful to sit in for extended periods). Those people aren’t being liberated. Those people are very literally wheelchair bound. Often over their obvious protests.

People in institutions who try to get out of wheelchairs tend to be strapped in with seat belts they can’t undo. People who persist in resisting that tend to be medicated until they can’t. People who live in institutions also tend to have some times in their lives where things look pretty good, where it looks like they’re being well cared for and that they’re happy and enjoying themselves. Those good times aren’t representative of what it’s like to live in a institution. On some level, everyone knows this.

I think sometimes, when people are afraid of wheelchairs, what they’re really afraid of is institutions. They’re afraid that needing a wheelchair means that those kinds of things will happen to you. They see people in wheelchairs having a good time and out and about in apparent freedom, and they viscerally feel like it’s an illusion, like it’s no more representative of reality than the times you see institutionalized people having fun and looking free.

I think that in order to teach people that they’re wrong about wheelchairs, we have to teach them that they’re wrong about institutions. Losing mobility doesn’t have to mean living locked up in a nursing home. Neither does losing speech or words or cognitive functioning. People with severe physical and cognitive disabilities live in their homes in the community.

There is no disability that means someone needs to be institutionalized and treated the way people are treated in nursing homes. No one should be stuck in an institution. Institutions aren’t inevitable; they are always a social failure. Institutions are bad; wheelchairs are good, and wheelchair users can live in their homes as free people and have good lives. 

Tl;dr Wheelchairs are good, but a lot of people are viscerally horrified by them. I think this is in part because people associate wheelchairs with institutionalization. They see horrible things happening to wheelchair users in institutions, and think that’s what it means to be a wheelchair user. If we want people to understand that wheelchairs are good, we need to teach them that no one needs to live in an institution.

im going to be honest and say that i hate with all my soul “””disabled”””” aus… like, you abled people love to write about someone being disabled and the angst and the total dependence in the other person and again, the angst, and how romantic it is that they stay (as if it was the biggest burden). meanwhile actual disabled people fear we’ll never find someone that is going to stay because al that cutie angst is our day to day basis. feeling worthless? check feeling isolated? check feeling like a burden? check 

but go ahead, and make it like we are tropes that make you feel inspired

The uncomfortable truth is that the fear of disabilities opened up the first respectful public conversation about abortion in the United States that listened to women telling why they believed they needed an abortion. Another truth is that when the women threatened by German measles appeared to be married, middle-class white mothers - the portrait of the respectable woman - it helped to win respectful attention from the media and politicians… To understand why a pregnancy that would possibly result in the birth of a “deformed” or disabled child made many women regard abortion as necessary, we must examine not only general attitudes towards the disabled but also the material realities of motherhood and childrearing.
—  Leslie Reagan, Dangerous Pregnancies
Don't assume you know the reasons someone needs accomodations

So, here’s a thing that happens:

  • Person with a disability: I need accommodation x.
  • Person with power: Oh, you have condition y! No problem!
  • Person with a disability actually has condition z, which needs some of the same accommodations as y, but also different ones.
  • But they’re afraid to correct the person with power, lest they think that the actual reason isn’t a good one, and stop being willing to do the necessary accommodation.
  • And they’re also afraid to ask for some of the other accommodations they need for the condition they actually have, because then they’d have to change the conversation.

For instance:

  • Student with an audio processing disorder: I need to sit in the front in order to understand what’s going on in class.
  • Teacher: Oh, because you can’t see the board otherwise! Sure, I’ll make a note of it on the seating chart and be sure not to assign you anywhere you can’t see the board.
  • The student is afraid to correct the teacher, because they might not think audio processing problems are a real thing. Or the teacher might feel like the student lied to them, even though the student never said anything about vision.
  • On a field trip, the teacher doesn’t realize that the student needs to be near the tour guide. The exhibits are large, and students gather around them and can see them equally well from any point, so the teacher doesn’t realize there is a problem.
  • And the student is afraid to say that there is a problem, because the teacher hasn’t shown that it is safe to do so, and has given some indication that it isn’t.

So, do not be that guy. Don’t tell people what their disability is, or what their needs are. Doing so makes it harder for people to tell you what accommodations they actually need in order to be able to participate.

Instead, ask. Don’t ask invasive personal questions, just ask what people need. 

  • Listen
Play

We asked people to leave us a voicemail and tell us about a fear they’ve conquered. Call 314-643-6152 to share your story.

Hi, my name is Kim. I conquered one of my fears in 2014. I was diagnosed as dyslexic when I was 7, and I’m almost 31 and I still have no idea what that means. 

All I know is that I cannot read or think as fast as my peers – and I have lived with the fear that I’m not actually learning disabled, I’m just stupid. And this year, I finally became confident enough. I’m about to finish my PhD, so just going through that process, I finally am starting to accept that that is not true. And I feel set free. Thank you. 

Big news. I just finished my first major piece of art in several years. My neck and shoulders hurt. My teeth hurt. My mouth tastes like colored pencils. But I did it. I pushed my way through my disability, my fear, my self-doubt. I finished it and it’s not terrible. I can tell you now that her name is Zaela, Crown Princess of Altora. She’s the central figure in a historical fantasy novel I’m going to do. The kingdom of Altora is a bit like the lost city of Atlantis but filled with my own magic and political intrigue. While I can see all kinds of mistakes in this piece, I’m still thrilled that I did it and I’m back in the saddle with my art. I don’t mind putting heating pads on my neck and upper back if I can get my art out there. I just proved to myself that I can still do it and I FEEL SO GOOD ABOUT MYSELF RIGHT NOW. If you want to do art, you can do it if you’re determined enough. I do art with my mouth because of my disability, so if I can pull together determination to accomplish a goal, you can too - art or not. Finishing something you didn’t think you could do is the biggest high.

DAY 2870

Jalsa, Mumbai                Feb 9,  2016               Tue  11:52 PM




No where to go .. no one to report to .. no work and no commitment as such .. no compulsion for any factor .. no one to question .. not one task questionable .. no timings to keep .. nothing to attend, nor to come away from attend .. 

The time to pass as it passes .. the hours to go by as they go by .. and the relevance of its gravity never to be dictated or complied with …

When there is concern for the times of work there is time for its no work too .. there is rest and relaxation in equal measure .. there is efforts to rebuild all that was physically lost during these months of relentless work and there is an opportunity to resolve all that may have been pending to be resolved ..

Some among the Ef write with concern on an indication of disability or indisposition .. they fear out of turn and unwanted concern .. there shall be shortcomings and niggles of concern at any age , but more pronounced at mine .. and so when there is reference to it, be not afraid or of concern .. it is natural and normal .. illnesses shall come and go or stay .. that is unavoidable .. accepting it is a better condition, than the one they and others would wish it to be  ..

Flowers are rare and beautiful .. they signify that which is celebratory and fine .. of love and affection and care .. of smiles and gratitude .. all of which has lain close to mine eyes .. and now with you ..

Orchids are varied but rare and of some value .. to them that reach out to me such value is worthy of its presence ..

But worthy are them that adorn my life .. my 3 beauties .. flowers on the right side of the hair dressing and all ..

Ladies are special .. they always were and shall always be ..

My love to all .. especially the ladies .. the special ones .. the men are too .. but ladies .. they be special .. !!


Amitabh Bachchan