October — Meet the Blind Month (Or — I WILL NOT PARTICIPATE IN YOUR FREAK SHOW!)

Fire Japanese Maple tree in the Fall

 

It’s October – pumpkins are growing and pumpkin flavor is being put on everything, kids (and adults) are debating what to wear for Halloween, the leaves are changing colors…

And I get a few emails requesting an interview or to be a guest speaker to their event for “Meet the Blind Month.”

According to the National Federation of the Blind, Meet the Blind Month’s purpose is to spread awareness of the NFB and there goals; they do this by promoting events that support the NFB.

Sound good? On the surface, yes; what organization doesn’t do something similar? However, without fail, every October I am frustrated – by the blind – and harassed – by the public. Without fail, every October, I politely send out my sorry-will-not-be-able-to-do-anything-this-month rejection email towards those who want me for their Meet the Blind Month related interviews or events.

Why? Isn’t it important to show the public that the blind and visually-impaired are just as vital to the community? Shouldn’t the blind and visually-impaired go out and show the public that they are capable of doing anything and everything they put their minds to? Isn’t it important to knock those barriers down; to show the public that the blind and visually-impaired are-just-like-them?

Yes. Yes. Yes.

And still I won’t participate in Meet the Blind Month related events. Let me explain why.

I am not a freak show. I am not here to do a song and dance for the public. I will not inform every-single-able-bodied-person on my medical history, on my “regrets,” on my “hopes for a cure,” on how I do everyday things – just-like-they-do (which seriously, just use common sense; it’s not rocket science on how I shave, eat and shop).

(The quotes are sarcasm; the regrets I have – which are very few, fortunately – have nothing to do with my vision. Nor do I hope for a cure. I am happy with the way I am.)

What do you mean “freak show?” The NFB doesn’t agree with nor do they promote freak shows.

True. And yet…

Braille Alphabet Chart

I have seen the blind (not just those affiliated with the NFB) walk around populated areas (farmers market, town center, churches) handing out cards that have the braille alphabet, handing out brochures and pamphlets on “HOW TO TREAT THOSE WHO ARE BLIND” or “BLIND PARENTS ARE JUST AS CAPEABLE AS SIGHTED PARENTS,” “FAQs ON BLINDNESS,” etc. I have seen people who are blind invite the able-bodied to ask questions about their blindness and how they do various tasks without being able to see.

If you want to do all that – then be my guest.

I however refuse to stroll up and down the sidewalk, stand in front of a store, or sit in a restaurant loudly proclaiming my blindness and opening my arms to the public, welcoming their invasive questions and comments, prayers and pity.

As a disabled person, the public already considers me public property – to move, to make an example of, to study. And for eleven months out of the year, I can choose to converse with those asking questions about my vision, or how I can exist without it. Then October comes, those who stood beside me – sighted and blind – understanding my choice and level of participation in these conversations are gone. I am no longer the advocate or self-assured woman; I am the one holding us back (how can the public understand us if we don’t answer their questions, if we don’t show them what we can do?), I am the rude one (how can you expect the public to understand the blind if you don’t answer their questions, if you don’t show them what you can do?).

Choice. Having the choice to say no to one person and yes to the next one. Having a choice to participate in a question and answer form on how I live my life. Having the choice to give detailed information on my medical history when asked. Choice.

It is my choice to say yes and to say no; and to say no without feeling guilty of betraying “the cause,” or being rude for not being an open book for the public’s perusal.

Living a Life of Tragedy or The Truth of Living with Blindness

Keshia standing beside the staircase in a purple, three-quartered sleeve blouse, black dress pants and heels.

When people find out I am blind, they usually react in the following ways:
• A moment of silence – this person silently regrets all of the life experiences I have missed out on. They immediately begin talking (to me or—usually—to the person we are with) about how sad it is that I will not be able to achieve a reasonable quality of life.
• An awkward pause – this person doesn’t know what to say or do, they feel as if they have committed a social faux pas. Do they make a joke (“I thought you were wearing sunglasses in the house because you were high!”), do they apologize for not knowing, do they ignore it and continue with the conversation? In the end, the conversation never picks back up; knowing that I am blind makes it difficult for them to see me the way they did before: normal. And how do you interact with someone that is not normal?
• Start to praise – this person considers it their duty to inform me that I am doing so well (for being blind). They start listing my accomplishments and comparing me to people they know who haven’t achieved half of the things I have (and are not disabled).
• And? – This person doesn’t care. This person may or may not ask one or two questions, then continue with what we were doing at the time. This person doesn’t feel pity or concern or awe.

 

The first three people have something in common: they all believe that it is a tragedy to be disabled. To them, my life has been negatively affected because I am blind.

 

We are taught (both able-bodied and disabled) over and over again that disability, or being disabled is a tragedy. The mind and body damaged, requiring rehabilitation, treatment or (preferably) a cure. Society says that to be disabled is to be completely dependent on the state.

 

But why? Why is society so ableist? How did we get to this way of thinking?

 

To me, there seems to be two reasons. A religious reason (which I talked about in a previous post), which views disability as a sin, a punishment from God. And a medical perspective, which views disability as an affliction, something that needs to be fixed/cured, or prevented at all costs (antenatal termination).

 

To many people, being disabled means that your childhood was lonely, your education was stunted, and you will never have close and healthy relationships with others.

 

Disabled Childhood

Eight-year old Keshia at Buchberg, Schaffhausen dressed in light blue jeans and a dark blue sweater with three brown cows behind her.I grew up participating in gymnastics and ballet. I read large print. I enjoyed roller skating. I wore contacts. I had to make my bed and clean my room. I had to sit in the front row of the classrooms. I hated (and still do) drinking milk. I had to take eye drops twice a day for my glaucoma. I got into fights with my younger brothers. I used a magnifying glass to read. I played with baby dolls and hated Barbie’s. I had countless surgeries on my eyes. I loved hiking.

 

Disabled Learning

My favorite class was math. Once I learned braille, math became a lot more fun and faster for me to complete. I thought science was too hard. I had an Individualized Education Plan. I graduated from high school. I had extra time to finish tests. I graduated from university with a bachelors in English and Gender Studies. I take class notes in braille. I am currently pursuing a masters in Gender Studies.

Disabled Personal Relationships

Despite my mom’s constant urging, I am not married and I do not have (nor want) kids. I have a circle of best friends. I am close with my family.

 

As you can see, my life has not been negatively affected because of my disability. Nor has it been enriched because of my disability. Have I experienced hardships? Yes. Not because I am blind but because of societies attitudes and perceptions of the disabled and our abilities. Despite having a disability, I experience, achieved and am pursuing many of the same things countless others my age have.

So You Have A New Roommate

Having a roommate can be challenging for anyone – sharing a space, having to make sure you’re not too loud, not able to do the things you could if you were alone, worrying that they would be dirty, a thief, a party animal.

However, if you have a disability, there are a whole other challenges to think about. Of course you may be upset at the fact you have to share space (clearing space in the fridge, cabinets, counters and pantry), having to remember you can’t blast your music as loud as you want when cleaning the house or taking a shower, can’t walk around topless – or naked – whenever you want, if you will have cockroaches because your roommate doesn’t know what a broom is for or what it means to wash dishes, whether or not some of your things will go missing, or if you will have the cops called because your roommate thinks it perfectly normal to throw a party ‘just because’ on a Tuesday night.

But you also have to worry about other things; like whether or not your roommate considers themselves to be your twenty-four seven at home nurse, or they consider you to be a diseased annoyance, or their very own personal freak show.

Here’s how to spot what kind of roommate you have – and how to put a stop to it.

Caretaker

This is a roommate who feels the need to take care of you; whether because they get enjoyment out of it or because they feel like they have no choice. You are disabled, they only want to make things easier on you – no need to wash your clothes, mop, clean your dishes; they’ll do it for you (and they’ll do it the right way).

Despite the fact that you’ve been taking your medicine on your own for years, they’ll be behind you every morning and every night making sure you’ve taken your meds. Sometimes, they’ll even want to watch. Although they’ve never had to take meds, they’ll give you tips on how to put your contacts in or take them out, the right way to put eye drops in, the way you should organize your pills and what you should wash them down with.

They’ve only known you for a short while, but they consider themselves to be an expert on your disability; they’ll tell their friends what your strengths and weaknesses are, what you can and cannot do.

When company is over, they’ll go on and on how rewarding – but difficult – it is being a roommate to someone who is disabled. They’ll go into detail on how much they help you. They’ll sigh over how difficult you are about not excepting help when offered.

They’ll praise you over the simplest tasks – that you have been doing on your own for years – and gently reprimand you when they think you are pushing the limits of your body. When you don’t have enough energy to do much, they’ll be right there pointing out how right they were about your body’s limits and abilities.

How to Stop It

One of the things I do when a new girl moves in is make it known to them right away that I do not want them to clean up after me. “If you notice that I’ve missed a spot when cleaning, let me know right away, do not clean it.”

You have to make it clear that you expect a normal roommate relationship between you two. Your roommate wouldn’t expect to take care of anything around the house for an able-bodied roommate, and they should expect the same thing with you – despite having a disability.

Unapologetic Ableist

This roommate is someone who feels very uneasy about your disability, or they think it an annoyance to have a disabled roommate. They’ll stare at you when you walk into a room. They’ll back up a few steps when you come closer. When you try to get to know your roommate, they’ll answer all of your questions, but won’t reciprocate.

They speak more to your aid (if you have one), to your friends, or to your other roommate than they do to you.

They’ll ask if labeling the stove, oven, microwave and washer and drier is really necessary when you have friends that can help — do it for – you. When you tell them that you are willing to work with them to make things easier for them, they’ll sigh and walk away muttering “forget about it.”

Knowing what kind of disability you have, they refuse to socially adapt to it – for example: if you are blind, they will nod or shake their head instead of giving a verbal response.

They think of you only as a disability, not as a person.

They will not think it fair that you are not being charged by the apartment complex for having a service animal.

When in a group of people, they’ll make plans with everyone and not include you; if brought to their attention, they’ll give an excuse about your disability and how it would be too hard.

If you are out in public with them, they’ll ask you if you really need to bring your cane, where your sunglasses or keep your dog in harness. They will want you to pass as an able-body as much as possible.

They’ll compare your aches and pains to their experiences (“I know exactly how you feel, I felt the same way when I have headaches/sprained my ankle/had an earache/I get moody too, especially when I’m on my period/I gain weight like crazy too, especially during Christmas.”).

They are extremely uncomfortable at the fact you have an active sexual life.

They make assumptions on your mental capabilities based on your disability.

How to Stop It

Living with someone you don’t get along with is hard; living with someone who doesn’t like you because of something you can’t change is terrible.

At first you will give excuses for your roommates attitude; you will say things like, “their not a people person,” or “their probably going through a hard time.” Then you will start to notice how they only act that way towards you.

Maybe you will start to notice that they only tense up when your disability is mentioned (when you and your other roommate are talking about her migraines and your glaucoma headaches) or too much in-their-face (when you are reading the braille labels on your jars of sauces).

Do not ignore it; this will only stress you out and make your living situation unbearable – it is not your fault and you shouldn’t feel uncomfortable in your own home. Talk with them. Be as blunt as possible; do not sugar coat anything, you have a disability, so what – it is nothing to be ashamed or disgusted over.

If they can’t handle it and more problems arise, then I suggest you say “fuck it,” and be as disabled as fuck.

No seriously, if you live in a university apartment complex, then speak with someone in the office; they have someone there that could either move you or the ableist into another unit. If you live in a regular complex and were there first, then don’t worry about it; they’ll have to move. If you came after and nothing is working, then you will have to decide if you can stay there until your lease is up or if you can find another place to stay. Sometimes situations aren’t fixed; people won’t want to change and be open minded.

Just remember: it is not your fault; there is nothing wrong with being disabled.

Fascinated Watcher

This is a roommate who watches you as you poor tea, vacuum, wash dishes – someone who avidly watches you do anything at all. Everything you do is amazing; everything you do is impossible to imagine.

When your disability is brought up in conversation, they are amazed you don’t shy away or start to cry. During the conversation, they’ll ask you over and over again if you’re okay, if it bothers you that their asking about it, if you’re uncomfortable.

They’ll want to know your life story; how did you become disabled, were you born that way, do you know why, is it treatable. They’ll want to know how you feel; are you depressed, is your life hard, are you terrified. They’ll want to know your dreams and regrets; do you wish you weren’t disabled, you’ve missed out on so much.

They’ll praise you for getting out of bed and putting on a brave face. When getting to know you, they’ll focus on your disability and your bravery; they won’t ask about your job or college, they’ll just assume that you don’t work and don’t have an education. They’ll be surprised and amazed that you do, in fact, have a job and a college degree.

When they find out you work with disabled people, they’ll be unsurprised, saying that they are sure you teach them so much. If you don’t work with the disabled community, they’ll be surprised and wonder why.

If you are blind, they will expect you to be able to sing and play the piano. Some may even expect you to know sign language.

They’ll automatically think that if there was a cure, you would take it. They will not know how to take it when you tell them that, no, I do not want my vision back, I am happy with who I am – although I would like to get rid of my overbite.

They will always introduce you as there “insert disability” roommate. They will frequently say things like, “I can’t even do that and I’m not (insert disability)!” They will think the highest compliment is “you don’t seem disabled at all.”

They assume that all of your friends and your significant other is disabled.

How to Stop It

You’re going to be living with this person for a while. Be very honest with them. Tell them how uncomfortable or annoying it is. Show them how inappropriate there comments are – if they wouldn’t say those things to an LGBT+/person of color, then don’t say it to me; there’s nothing amazing about getting out of bed and doing everyday things while living.

 

Whether you have a caretaker, an unapologetic ableist, fascinated watcher or a mixture of all three, remember that you know your body and your limits, there is nothing wrong with being disabled and you deserve to feel comfortable in your own home. Be honest with yourself and your roommates. You are not a teachable moment; your health and life story is not for anyone to know. You have boundaries and everyone should respect that.

What Christians Have Taught Me About My Disability

“You’re amazing. I’ve been watching you for the past ten minutes; I don’t know how you do it. God has truly blessed you.”

My lips barely curving into a smile, I thank her. Still facing forward, I gesture for my Seeing Eye dog to start walking. She takes a few steps, then stops.

“Sadie, forward.” I command. She doesn’t move.

“We were wondering if we could pray for you.” A man to my left.

“To heal you.” The woman from before explains from behind me.

“It won’t take long.” Another woman in front of me.

“Almighty and merciful Father,” a man to my right begins. The woman from before comes closer to me. She lays her hand on my shoulder, lightly pushing me deeper into the circle. “Please fill her with your healing power. Precious God, cast out all that should not be inside of her. We ask you to mend all that is broken—“

“I’m sorry,” I interrupt. “I’m not looking to be healed. Thank you for the thought though.” I gesture for Sadie to go forward. She doesn’t move.

“You don’t want to be healed – for your eyes to be fixed? Your life would be so much better.” The woman in front of me.

“I’m actually happy with my life right now – being blind and all. I really have to go, so if you’ll excuse me. Sadie, forward.” Sadie guides me to the left onto the grass, we walk a few steps then she guides me back on to the sidewalk. Out of the circle now, I whisper to Sadie to “hup-up,” she picks up her pace; we are rounding the corner when the woman who first spoke to me catches up to us.

She apologizes for offending me. She said that they just wanted to help. They wanted to ask their Lord to heal me so that my body could function the way it was created to be. “Don’t you want to be able to see? To be whole and complete?”

“No. I don’t. I’m fine with the way I am.”

Taking my right hand in both of hers, she went on to say, “You have a point: God made you this way for a reason; he has a plan for you. God bless you.” Before I could say no, you misunderstood me, that wasn’t my point, she patted me on the shoulder, turned and ran back to her friends.

 

 

 

For as long as I can remember, Christians have told me about my disability. That having a disability was a sickness and needed to be healed. Or that my disability was a blessing, meant to touch the lives of those around me.

I was seven when my brother’s best friend’s mother cornered me in the kitchen. Her fingers shackling my wrists, her voice loud and insistent, speaking in tongues. She told me, that by the power of God, I would be healed, no more suffering. I was seven – suffering was a word I hadn’t experienced yet. Later on, I found out she was talking about my eyes.

I was twelve when I lost the vision of my right eye and the vision in my left eye quickly deteriorating. Angry with my parents, my eye doctors – the world, I tried my hardest to fight being labeled blind. That year, the assistant to my PE coach told me that there was a reason I was going through this. God had plans for me; by taking my sight, I would be a test for Christians: will they be respectful and charitable to the unfortunate? I can’t remember what activity we had that day for PE, but I know I was upset that I couldn’t participate. I needed to hear, “I’ll talk with the coach to make sure all activities are accessible,” or “This won’t happen again, I promise you.” I did not need to hear that I was being used as a test for Christians to prove something.

I was fifteen the first time a pastor tried to heal me. Instead of shaking my hand and briefly commenting on the sermon, he took my sunglasses off, placed his hands on either side of my head and started to speak in tongues. My cane was taken from me. Those who were watching came closer, pushing me and the pastor in the middle of the circle. Later on, I would learn that the people who surrounded me, and held me there did it to protect me. Sometimes, during a situation like this, the person who is getting healed would go into spasms, shaking and trembling with the Spirit. It happened twice more at different churches. My permission was never asked for.

The first time a group of Christians surrounded me and started to pray was when I was twenty. It has happened ten times since then. I get requests when I am walking to the library, walking to my apartment, getting juice from Publix. I had to get forceful with my rejection for a healing prayer twice; in both instances, they refused to accept my decision, one didn’t let me out of the circle until I took my cane to their ankles (by that point, they angrily told me that I deserved to be blind, and that I was being punished by God for my mother’s sin), and the other didn’t let me out until my driver from paratransit came to pick me up.

When I am out with family or friends, I have had strangers tell them how wonderful they are, they are doing good work, ending with a heartfelt God bless them. When this situation comes up, I remember the last line in Luke 14:12-14:

But when you give a feast, invite the poor, the maimed, the lame, the blind. And you will be blessed, because they cannot repay you; for you shall be repaid at the resurrection of the just.

 

Which I take to mean, there is no social or financial gain in spending time with the disabled (we have nothing and are incapable of offering you anything in return) – the only thing you get out of it is a feel-good moment, charity work, humbling yourself for God’s reward. My family is used to these incidences, they will smile or nod and continue on with their business; my friends usually smile back with, “She’s actually doing me a favor.”

This is not to say that all Christians are ablest – people with disabilities are to be pitied, healed (fixed/made normal/made complete). Nor am I saying that they all believe disabilities are an act by God – punishment, warning or test. Nor am I saying that Christianity promotes any of the above. However, I am saying that the culture of the Church does neglect the disabled (not hiring interpreters for the Deaf, websites not accessible for the blind, building not accessible for people in wheelchairs, programs, clubs and events for the Church not inclusive); and by doing that, they give a clear message of insensitivity and indifference. It also doesn’t help that sermons are full of examples where disability is viewed as a punishment (for sinning or lack of faith), something to be endured in order to purify the righteous, and an act of charity. The continuous metaphoric use of disability and disobedience to God doesn’t help either.

We are not to be pitied, we are not the teachable moment, we are not sick or incomplete, we are not a miracle, we are not a punishment, and we are not an act of charity.

So Christians, when you see someone with a disability, if your first reaction is to pity them, to hope that one day they will be healed, to think highly of the person they are with – re-examine your attitudes towards people with disabilities. Where do you think these thoughts are coming from and why do you still hold to them, do you really think the only way for a person to feel complete and happy with themselves and their life is to be able-bodied (if you are able-bodied, do you feel complete and happy with yourself and your life?), should people really be praised for being with/a friend to a person with a disability?