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.

Anxiety and the Calming of Spices

When anxiety keeps me from sleeping, the only thing I can think of to distract myself from having a breakdown is reorganizing my herbs and spices. This distraction has never failed to calm me down. Head bowed, body curving over the cutting board, left hand gripping the edge of the counter, my right hand holding a jar of something that never fails to remind me of home.

Orlando, my mother’s kitchen, both of us trying (and failing) to make cookies out of the book of recipes she brought to the US from her home more than twenty years ago; we argued and laughed the entire time – and although the batch didn’t turn out well, the batter was so, so good. In Oviedo, my dad’s kitchen, making a mixture of herbs and zests for the first time. Buchs Switzerland, my grandmother’s garden, where everything has its place; her soft, sing-song voice instructing me on the types of vegetables she has and how to take care of them. Jacksonville, with my aunt, picking out fresh herbs and vegetables, discussing our meal plans, barely containing our eagerness to eat.

This month has not been kind to me; this morning was the fifth time I could be found re-organizing my herbs and spices. Today I chose to organize them by my cooking style – since I primarily make pastas and rice dishes, those spices – whole, ground and blended – are displayed beautifully on the far right corner of the counter. I rarely bake, so my extracts, sweet, and nutty spices are shelved with my cake pans and sugars.

With each spice being put in their new place, my worries and negative thoughts are being replaced by assurance and love. My right hand stops shaking by the time I slide turmeric next to the ground rosemary; there’s no need to worry on whether or not a potential employer will ignore my disability and give me a chance to prove myself, it has happened twice before, it will happen again – I am intelligent, passionate and will be a credit to any company. My left hand unclenches, feeling slowly coming back, as I slide ground thyme next to the red pepper flakes; there’s no need to worry about money, I will have a job soon, then not only will I be able to help myself, but my mom as well. The tension in my shoulders relax as I slide ground basil next to the dill weed; my friend won’t have to leave the country she has found so much freedom in, she’ll find a job, be sponsored and will be able to finally relax. My head is raised when I slide bay Leaves next to the oregano; soon I will find a doctor who will prescribe the right medicine for my tension headaches – medicine that won’t have side effects that are worse than the pain of the headaches. My breathing is uninterrupted and regular when I slide the ground ginger next to the creole seasoning; I am okay and I will be okay.

 

“Life is uncertain. Eat dessert first.” –Ernestine Ulmer

“It’s difficult to think anything but pleasant thoughts while eating a homegrown tomato.” –Lewis Grizzard

“One cannot think well, love well, sleep well, if one has not dined well.” –Virginia Woolf

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?

Someone Who Is More Than A Few Eye Diseases And A Pair Of Messed Up Eyes

Having multiple eye diseases and a scleral shell means that I am at a doctor’s office at least three times a year. Whether I am seeing my ophthalmologist or oculist, the experience and treatment I receive from them is always the same. They are professional, dedicated and more importantly, they treat me as an individual – someone who is more than a few eye diseases and a pair of messed up eyes.

I have been seeing an ophthalmologist for more than twenty-four years and an oculist for more than ten. My feelings on seeing my doctors have certainly changed, from fear to annoyance to acceptance. I have also realized that my feelings about the waiting rooms and the receptionists have changed too. From joy and eagerness (the thought of getting a lollypop no longer excites me…sort of) to annoyance and frustration.

At my ophthalmologist, the front desk is long – almost half the size of the first waiting room. Today, four people sit behind the desk. Each person has a line of people waiting to sign in. On either side of the first waiting room, there is a larger waiting room. Each of these waiting rooms has a small room attached full of toys for the children. My dad and I decide to sit and wait for the lines to clear.

Regardless of whether I am at my ophthalmologist’s or at my oculist’s, the waiting rooms are different – but the people sitting in them are always the same: young, bored, crying, confused, with or without a cane, in pain, tired, in denial, old, impatient, scared, nervous, lonely, etc. In a twisted way, it is a comfort to me; being there lets me know that I am not alone. The five year old crying, that was me too. The pissed sixteen year old that just lost her vision in her left eye and wants to be anywhere but here, that was me with my right eye at twelve. The man who tells me he just lost his vision, that was me at sixteen. The mother fearing that her child won’t be able to go to college or achieve any of his dreams, don’t worry I tell her – your son will grow up and be a teenager (with all that entails), he will become an adult and accomplish anything he puts his mind to.

The lines have finally cleared and a woman calls to my dad to come up. I walk over ready to give her my information. As I reach the desk, she raises her voice and asks my dad – who is still sitting – for “Her name.” I answer. She then asks my dad “Who is she here to see?” I answer.

This is why my feelings have changed. You work for eye doctors – eye doctors who specialize in eye disorders and you deny personhood to clients? You are the first person they meet – what message are you conveying by not acknowledging us? You are not being welcoming, you are being disrespectful.

I remember scoffing at sensitivity training workshops. What a waste of time – telling people to treat those who have a disability the way you want to be treated. I’m a lot older now – and I understand that most people turn into fools when it comes to us. Unfortunately, sensitivity training is actually needed.

Sensitivity training is a form of training with the goal of making people more aware of their own prejudices and more sensitive towards others. The training provides factual, relevant information to break down assumptions and stereotypes. For example: if an able-bodied person came in, signed her name and answered your questions, assume that the next person in line – whether disabled or not – will be able to do the same. I will always ask for assistance if I am not able to do a certain task on my own – example: signing my name; I don’t know where the line is, so I will ask for help.

Don’t treat us as if we don’t know and can’t do anything; we face that every day. But when we walk in this office – its walls full of pictures, posters and pamphlets of people with little or no vision being themselves and achieving anything, magazines on each table full of knowledge on eye diseases and where to find help. When we come here, we need to know that this is just another bump in the road – a bump that we can get over – don’t act as if the only way we exist is our disability.

All Sexual Assault Victims Welcome — Except those with Disabilities

Trigger Warning: Discussions of Rape and Abuse

The National Sexual Assault Hotline: 1-800-656-4673 – also hosts an online hotline

The National Domestic Violence Hotline: 1-800-799-7233 – 1-800-787-3224 (TTY)

 

A year ago, I was taking a class on women’s health. We discussed important topics such as cancer, heart attacks and sex, and we learned about different organizations that help any woman in need, whether it is for medical, protection or psychological. One of the things that made that class so memorable was V–, a guest speaker from the Women’s Center who came to speak to our class.

V— came to class and wowed everyone; she told us about the Women’s Center, what programs they offer and spoke about race, sexual orientation and gender issues that are frequently encountered when it comes to sexual assault and domestic violence. She was open and inviting, and a few students in the class felt safe and comfortable enough to speak out about their experiences and the challenges they faced and still face today. She ended the lecture with, “To realize that you are not alone can make all the difference. We are hear for you.”

                I left the class with a feeling of uneasiness.

The uneasy feeling persisted for the next few weeks. I couldn’t stop thinking about V— and the things she said; something was bothering me. Was it the fact that we were talking about rape—a topic where many outright ignore or joke about? Could it be because a few of my classmates told us about their experiences? Was it because for most victims of sexual assault, the amount of support from authorities is usually based on their race, religion, sexual orientation and economic status?

In an attempt to figure out the reason for me feeling that way, I became obsessed with the history of rape and violence in the United States. I started to read every book and research paper I could get my hands on. I read about date rape, prison rape, rape and violence in the LGBT+ community and rape trauma. Only that wasn’t enough. Where were the books on the history of rape and violence for people with disabilities? Where were the self-help books on dealing with the trauma of rape for people with disabilities?

That’s when it clicked – I knew why I was feeling so uneasy: when V— came to our class, she spoke about what they do and who they are here for – she specifically mentioned the LGBT community, people of color, those whose first language wasn’t English. She spoke to everyone in that class…except those with disabilities.

                Why did it bother me?

It is hard to put in words. The emptiness, the feeling of not being worthy or thought of – the absence of your identity, of people who go through the same things you do, not having a space, not being included or thought of in important, everyday life situations… It’s heartbreaking.

By not recognizing people with disabilities and the issues they face when it comes to sexual violence, I felt as if the Women’s Center didn’t know how to help. Reporting rape is already a hard thing to do – but if you don’t feel as if they would be able to serve you, it can stop you from ever taking that step.

Where do people with disabilities land when it comes to sexual assault and domestic violence?

                Why is this important? If an abled-bodied person is raped and a person who is disabled is raped, what’s the difference?

  • An abled-bodied person can communicate more effectively than a person with a disability.
  • An abled-bodied person will have their choices respected and listened to more than a person with a disability.
  • An abled-bodied person won’t have to wonder if the hospital is ADA friendly.
  • To many criminal justice personnel, an abled-bodied person will be considered more credible than a person with a disability.

Calling the Women’s Center

I finally called the Women Center and asked a question: when it comes to victim advocacy, what are your procedures for those with disabilities? I spoke with three people, and none of them knew. The last person I spoke with said that they do speak to the On Campus Transition program (a program that provides young adults with intellectual disabilities the opportunity of having a transformational college experience as an integral part of their transition to independence). She said this happily – as if this were a treat – as if this were an answer to my question. Which I took to mean: the only time they go over the procedures they have for those with disabilities is when the audience is disabled.

                What’s wrong with that?

People with disabilities are everywhere. We sit next to you in class, we’re driving the car in front of you, and we’re the cashier, the professor, the waitress, the manager. With some of us, you are able to tell right away that we have a disability – but there are a lot of us with invisible disabilities. Rape can happen to anyone, therefore, when giving a speech, you should be as inclusive as possible.

Getting my questions answered

I finally got in contact with someone who could answer my questions. She went into detail about all the things they do: they call the hospitals ahead of time to make sure they’re ADA compliant, they make sure that they have the necessary resources available to communicate with victims seeking services (an ASL interpreter, a picture board, etc.) and the staff is appropriately trained on how to respond to disclosers from victims with disabilities.

After she answered my question, I asked her why they didn’t have a TTY number. After explaining what a TTY is, she agreed that it was an important thing to have. A TTY (Text Telephone) is a device that allows the Deaf, hearing-impaired or speech-impaired to communicate by typing back and forth to one another. It is important that all Women Centers have one – this allows those who use a TTY to ask for assistance or an advocate.

The unfortunate truth is that people with disabilities are more vulnerable when it comes to abuse. An abuser can take their mobility aids, deny them their medicine, and control their communication (deny use of a TTY or refuse to interpret); many times the abuser is a caretaker.

If you do not have a TTY number, if your website is not accessible with screen readers, if you do not have ramps or a workable elevator, if you don’t mention how accessible and inclusive you are, what message are you sending out?

I am glad I called and voiced my concerns. She understood that there needed to be changes. She knows of the risks and consequences. She was open to change and understood the importance of being all-inclusive. She thanked me for bringing it to her attention and assured me that she would speak to her boss about it. I got the result that I wanted: the Women’s Center will be able to truthfully say that they are here for everyone in need of advocacy – and if I ever need their help, I know that they would be able to assist me.

A Blind Woman Enters Victoria Secret…

I don’t get a chance to visit home often, so when I do, I make it a point to spend as much time with my mom as I can. So yesterday, realizing that my brothers and her boyfriend wouldn’t be home for hours, we decided to go shopping then out to eat.

Victoria Secret was our first stop. Teddies, shirts, thongs, boy shorts and so much more greeted us when we walked in. What’s that – a bin full of bras on sale? Don’t mind if I do. Lace, ribbons, beaded, dotted and bows; full, padded and plunge; racerback, convertible and balconette. All wonderful but not what I was looking for.

“What size is she? What style is she looking for?” Although these questions were about me, they were not to me. With a few words, the employee my mom gestured over to help me, has shown right away that she does not consider me a part of this conversation – although it is my body she is discussing. This is not new. I have never been to Victoria Secret but I have been a witness to this scene many times before.

My mom doesn’t answer. She turns and walks to a bin a few feet behind me. This shows the employee that she is not – nor does she consider herself to be – a participant in this conversation. I wait a few seconds then answered her. I show the employee that I am a part of the conversation, I am knowledgeable about my body and what I prefer. I both appreciate my mom’s action and hate it.

Appreciation for not jumping in and answering for me – or telling the employee to ask me. Annoyance because in order to show authority over my body and mind my mom – the able-body – has to take a step back and exit the conversation.

The employee leaves to go through another bin. My mom comes towards me and shows me a bra she thinks I might like. While deciding whether or not I like it, the employee comes back – with the same bra. “Does she like it?” The employee has shown that she still does not consider me to have a voice. I am only the subject of this conversation – not a participant.

No. I did not like the bra. I put the bra in the closest bin, thanked her for her help, picked up my dogs harness and asked my mom where the babydolls were.

Babydolls run through my fingers: satin, lace, silk, ribbons, bows, rhinestones and ruffles; open-front and sheer see-through; thongs and G-strings; adjustable spaghetti straps, halter tops and off-the-shoulder sleeves. All beautiful but I couldn’t find one in a color that I like. After telling my mom what color and style I’m looking for, she walked down the rack calling descriptions out to me.

Denying each item she described, I reached down and picked up a babydoll that had the style I preferred. Finding out it was in a color I didn’t like, I placed the babydoll back on the rack.

Thinking I should call it a day, a conversation immediately caught my attention. An employee that I previously told not to touch my Seeing Eye dog was talking to a customer behind me. Normally I wouldn’t have paid it any mind, but I heard the words blind and lingerie.

The employee was telling the customer how amazing it was that a “blind girl was looking at lingerie.” She goes on to say she was watching me for a few minutes and how she was surprised that “the blind girl knows what she wants.” The customer wonders if I’m actually going to buy one and what I would need one for. They both laugh. The employee and customer were standing directly behind me. They did not lower their voices. They did not hide their fascination: observe me, a creature outside of its normal habitat, almost passing for normal.

I have heard comments like those made by the employee and customer many times before. I used to think I deserved these comments, there was something I wasn’t doing right – perhaps it was the way I looked or acted. It’s not though. There is nothing wrong with me. Being blind does not make me any less of a woman. There are women out there who enjoy wearing lingerie and no one comments. There are women out there who buy lingerie and no one comments. So why is it fascinating – unusual even – to see me do it?

When talking about sex, body image and sexual orientation, people with disabilities are not brought up. Very often, we are considered to be like children – touching one is bad, they don’t have a sex drive, you’re sick for even thinking that.

I have spoken with feminists, attended panels and lectures, took courses on feminism and sexuality, read articles and books on these subjects and people with disabilities are not brought up. We’re nonexistent. The only times people with disabilities are given a voice is when you read about, attend a lecture or take a course that focuses on disabilities.

It’s not right. There are women out there who can attend a lecture, take a course, read a book – and their image is there, in the open and talked about. They are given a voice. They are told over and over again in books, lectures, movies and songs that they exist. People with disabilities do not have that privilege. We do not have that right. Things need to change. We need to be a part of the conversation not just when it is all about us; we need to be a part of the conversation when they are talking about “everyone.” We need to be part of “everyone.” It shouldn’t always be us or them.

I remember taking a sexuality course a few years ago and people with disabilities were talked about for two minutes. That was the only time during the semester where someone with a disability was mentioned or shown. What was it about? We were discussing paraphilia’s. The image of a white woman in a wheelchair – and the PowerPoint read: acrotomophilia.

Acrotomophilia – an able-bodied person expresses strong sexual interest in amputees. It is known today as devotism – a sexualized interest in the appearance, sensation and experience of disability. Whatever you choose to call it, being attracted to a disability is disgusting; you are objectifying and dehumanizing us.

However, since the class only saw a person with a disability once, during a chapter on paraphilia’s, I would not be surprised if the class learned in those two minutes: if you are attracted to someone with a disability, it is considered wrong. It is bad. You are disgusting. People with disabilities do not have sex unless a pervert gave them attention; people with disabilities are not sexual – they should be pitied for being victims.

I didn’t say anything to those two women. I signaled to my mom that I wanted to leave. I have told a few people about this incident and only a few understood why I didn’t confront them. It is very tiring constantly having to prove that you are just like them. Next time, I will say something. It may be with politeness or with anger; but the end result will be the same: I will have to justify to that person why I took offence. I am tired. So very tired of being a teachable moment.