Bal’s Story – Wheeling myself is part of my independence and every time someone pushes me without my consent they take that away from me

I’m a part time wheelchair user and travel on trains a fair bit. Train staff push my wheelchair without my consent every damn time I need a ramp. Most recently (this summer) I asked the staff member to carry my bags so that I could wheel myself but they still insisted on pushing me declaring they could do both. I had to say no at least twice more before they relented and let me wheel myself down the platform.
On the tube, also this summer, I had parked my electric wheelchair in the wheelchair spot, the train was busy but not packed. An older guy stood very close behind me and decided that the handle of my chair would be a perfect leaning rest for him. I knew he was there and pressing on my chair but didn’t want to make a fuss in public (although I should have) so just sat there with a random guy leaning on what is basically my arm/leg.
I strongly feel that my wheelchair is an extension of me. I wouldn’t touch, pull or lean on a stranger and I certainly wouldn’t drag them where I thought they needed to be. Wheeling myself is part of my independence and every time someone pushes me without my consent they take that away from me. I know that to other people the touching is innocent and they’re trying to be helpful but they’re needs to be greater awareness of how disabled people see their mobility aids and why pushing people without consent is wrong.

Emma’s Story – staff commented on a perceived improvement or deterioration in my condition that didn’t actually exist. They even offered to pray for me!

I’m a lifelong disabled woman. My condition isn’t degenerative but the face I present to the world has changed significantly throughout my life. I have a lot of experiences of unwanted reactions (both physical and verbal.) and they really vary depending on which of my mobility aids I’m using.

As a child I walked and wobbled short distances in public with a lot of help and encouragement from my parents. I fell a lot but picked myself up again – and I was proud of myself for learning to do so. In my late childhood and teen years I still walked sometimes in public but as my independence grew and the distances I wanted to travel got longer I used my manual wheelchair more. By the time I was at university I basically never walked in public. I didn’t want to have to deal with all the reactions being both ambulatory and a wheelchair user brought. Four years later as a new graduate I had to buy my first powerchair. I really didn’t want to but living alone in a rural village with no accessible shop and being unable to drive I didn’t have a choice. Over a decade after  buying that powerchair I now avoid going out in public in my manual as I feel safer and better equipped to cope with the public when I’ve got a battery and motors to help me escape.

In a way the place I notice people’s reactions to me as a disabled person most is in the supermarket.

When I’ve walked in the supermarket as a child, people wanted to tell us that there are wheelchairs there if that’s easier for me and then not understood when we said “I’ve got a wheelchair but today I’m walking.”

As a teen shopping in my chair some weeks and walking others, staff commented on a perceived improvement or deterioration in my condition that didn’t actually exist. They even offered to pray for me!

A skill I worked hard to gain was the ability to wheel myself long distances  in my manual wheelchair. At uni I’d go round the supermarket with a friend. I’d wheel myself and they’d push the trolley. People would try to take that trolley away and give my friend a wheelchair trolley so it could be attached to me and I wouldn’t have to “struggle” pushing myself. But I hated to be pushed. And those so-called wheelchair accessible trolleys couldn’t be attached to the one I had (a lightweight one without armrests). That was around the time that supermarkets started offering a scooter for customer use so that would be suggested to make it easier. Those strangers meant well we would be the bad guys for saying no and being frustrated because having to take the time to stop and justify my choices actually made our shopping trip harder (and longer, too).

Nowadays I’m a powerchair user. I zip round the supermarket every couple of days. People ask why I don’t shop online, and perhaps go to the co-op or corner shop to get a “few bits to top up.” But I pass there on my way home each day. The Co-Op is further away and the fabled corner shop doesn’t exist

.

I went round in a loan wheelchair the other day when mine was being repaired. I knew if I broke the loan one I’d be liable for the cost of repair on top of the cost of repairing mine. I was petrified someone was going to try to help me and break it.

Because a few months ago the supervisor stepped right in front of me and grabbed my basket off my lap. She did it so suddenly I couldn’t stop and hit her ankle. This was my fault, you understand. Even though she had got in my way with no warning to force unwanted help on me, I was to blame.

And a week or two after that incident I was unloading my basket onto the checkout when the operator stood up and grabbed it off my lap. As she did so she caught the joystick of my chair and knocked it. My chair hit the checkout. It was undamaged that time but I’m scared it will happen again.

Marina’s Story – How can we educate each other about respect for personal space? It is a lifelong family, school, societal dialogue.

I can identify with this. As someone who seems to attract people experiencing emotional issues, and has been described as a good listener, I have frequently offered comfort in the form of a hug or hands resting on the sufferer’s shoulder.

Since I have had syringomyelia, a neurological condition resulting in acute and chronic pain, I understand how people touching me is just agony. They mean well but it is unbearable. I rarely say anything and try to shift out of reach but it is difficult to do this without offending the sensibilities of others.

Journeys on the underground are a nightmare. Having a stick provides little help in creating any personal space. It is usually ignored. Being crushed up against, leaned against, shunted along are all agonising. The dilemma of to travel or not to travel is what most disabilited people experience daily. Weighing up degrees of pain and its inherent emotional resilience are taken in each journey. Tough one.

Just being touched is ghastly. Even the anticipation of it is ghastly. How can we educate each other about respect for personal space? It is a lifelong family, school, societal dialogue.

Mina’s Story – ‘Sometimes people look at me like I’m ungrateful, and at other times they completely shut down and ignore me and what I’m trying to tell them, as if I’m not worth speaking or listening to. ‘

I have FSHD and use a manual wheelchair to get around safely using both my arms and feet to propel me around. On numerous occasions I’ve had people start pushing me without even asking first which is not only startling, but dangerous since my fingers can get caught in the wheels or my ankle sometimes gets caught underneath, especially when the ground is uneven. I’ve had to relearn how to position my fingers and hands so that I decrease the chance of them getting hurt. I understand people want to help, but it’s amazing how different it is now than when I was able-bodied. People feel so entitled to just touch me and push me and cross those boundaries. And when I tell people to stop and explain how my fingers can get caught, the reaction has been just as strange. Sometimes people look at me like I’m ungrateful, and at other times they completely shut down and ignore me and what I’m trying to tell them, as if I’m not worth speaking or listening to. I’ve literally had people turn their backs on me once I start talking to them and explaining that they should just ask first! It’s really that simple! And it’s not like I’m screaming at them, I start with a “Thanks, but next time….” but it’s no use.
Today was one of the worst days. I was waiting alone at the bus stop, and a man came up to me, started chatting, then put his hand on my shoulder and knelt down right beside me, trying to make conversation even when I refused to engage with him. I didn’t know what to do since one, he’s able-bodied and two, I didn’t know if he was on drugs or mentally ill as many people are in that area.Trying to get away might have provoked him, playing along would have encouraged him, there was no one around to get back up from, and I would not able to physically defend myself. He could have dumped me out of my chair if he wanted to, or hit me, and I wouldn’t have been able to fight back, not physically, and not with a self-defense weapon since they are illegal here in Canada. He came with me on the bus pushing my chair, and I finally felt safe enough to yell at him to stop. He got miffed and mumbled to himself, but he left me alone. But I was so angry that I had to put up with this unwanted touching and didn’t have a safe way to get away. I’ve been thinking about what I could do to avoid that in the future, maybe fake a phone call and wheel somewhere else? I just don’t know. It’s hard enough commuting, and it’s so unfair thinking that I would have to change my bus stop completely just because of these types of people or even that I have to waste time and energy thinking about how to keep myself safe when I’m just trying to get to work. And I know I’m rather lucky because people don’t know what FSHD is or what it looks like, so a lot of times people think I’ve been injured and am simply doing physiotherapy. After all, how many people in wheelchairs still use their legs? I think that’s part of the reason why people still listen to me when I have spoken up when the situation is safer.

Lisa Irving’s story

I ask that you please post my story on my behalf. Please include my actual name, Lisa Irving. My adversities have helped me to become a strong, compassionate woman who holds hope when others have lost it, or don’t believe hope exists anymore.

Decades ago I began to search for information about my adoption. I recall finding a letter from the adoption attorney who commended my adoptive mother for taking on the “Burdon” of caring for a “handicapped” child. The attorney’s letter was written in 1969. Fifty years later some of those perceptions have not changed much.

The first time I grasped that a stranger was cutting me with his words was when I was maybe nine years old. I don’t recall the specifics of what the grown man said to me but I remember understanding that he was putting me down because I was blind. Similar scenarios have played out and taken their toll on my spirit, chipping but not eroding my essence.

Here are just a few more examples of cruel words and ableist attitudes that have imprinted themselves within my inner-being. A college  music professor, told me how helpless I looked using my cane. An “ ex” told me to, “put that thing away”. (He meant my cane). For a while I did hide my cane because I just wanted to blend in but I never blended in.

In the late 1980s a nursing home administrator who I worked for called me into her office. She privately told me that she was not going to give me “special treatment”. She went on to tell me that she would never have hired me because of my very thick glasses. Twenty years later I met up with the former administrator at an adult education class. I wanted so much to confront her but I figured she’d likely not remember, or she’d deny her ableist and heartless attitude and words.

Let’s talk about intrusive touches. A few encounters really stand out. For starters, in the mid-1970s, I left the nearby school for the blind and started seventh grade at the nearby public school. I recall standing in the front office and in walked a Special Education teacher who introduced herself as, Ms. Hudson. Ms. Hudson proceeded to put her hands on the frames of my glasses and attempted to remove them from my face. I resisted. Her words stung the insecure adolescent who just wanted to fit in at her new school. The teacher trained to help students with disabilities spoke past me and said, “feisty creature!” I wasn’t even human! I didn’t have autonomy over my developing body according to this college educated professional.   

Fast-forward thirty years. I and my elementary school age son were at a cross walk waiting to cross the street. A man came up from up behind me and grabbed my arm. I screamed. I yelled for him to get his hand off of me. Of course, he self-justified his actions. I countered that I had no clue what his intentions were. I told him something to the effect that his intentions could have been to rape me. He screamed back, “who would want to rape you!” (Actually, 85% of disabled women are victims of sexual assault or rape).His inference was that I wasn’t a sexual being. I guess the stork really did deliver my son.

More recently, about several years ago I was back in the dating scene. I was interested in a well-rounded, educated and spiritual grounded man I met at church. I concluded real fast that he didn’t view me as his equal after one particular demeaning and hurtful encounter. I had asked for directions out of the worship center. This man who worked with acutely ill individuals and had a background in divinity came up from behind me; placed his hands on my shoulders and propelled  and manipulated my body out of the sanctuary. I wasn’t a woman in his eyes; I was an object without consideration for emotions, feelings or relationships. On a more humorous note, I later discovered that he was already engaged. Lol.

Over the past few years I’ve become more vocal and more assertive when misguided folks opt to use their hands rather than their words. Contrary to the woman at a San Diego bank who vehemently disagreed when I informed her that I was her equal; I am and that will not change. Therefore, my body is mine and no one touches my body without my consent.

Alaya’s story – ‘All my life, I have experienced people putting their hands on me, pushing, pulling, grabbing.. and all the backhanded compliments and invasive questions you can think of to go along with it’

I am 27 years old and I have been blind since infancy. All my life, I have experienced people putting their hands on me, pushing, pulling, grabbing.. and all the backhanded compliments and invasive questions you can think of to go along with it. Today, it astonishes me that in this age of #MeToo and #TimesUp, people still justify that this behavior is oK as long as someone is disabled. I work as a respite care and personal care provider for children and adults that have physical and cognitive disabilities. Comments I have received range from, “You have nothing to do with this,” when I have tried to advocate for a client, to “do you need help? Oh, I see that you have someone helping you shop.”, in reference to a four-year-old I was working with. People have alternatingly thanked myself and my partner for being with one another, depending on who “looks more disabled, “at the time. People have pet my service dog without consent, against my express wishes, and even grabbed her harness and leash at times. People have lash out when I did not move out of their way after they silently stared at me for several minutes. All these things including the unwanted touching, I have unfortunately developed a tolerance for. When it happened so many times over the course of just a day, I feel like there isn’t any other choice. Of course, I can try and educate, but that really isn’t my job, people were taught to keep their hands to themselves in preschool.
One instance I have not been able to brush off was much more sinister than someone “trying to help. “ A woman I had barely met an hour before, felt the need to comment on my breast size. When I was embarrassed, she reassured me that it was fine because she was large too. She then proceeded to try to grab my hand and physically make me touch her. Despite my rigidity and lack of enthusiasm, she continued to tug on my hand until I forcefully said no. Afterwords, instead of apologizing she proceeded to act very sensitive and insulted. She claims she needed to unwind, and that she was going to go home and cry. Despite getting used to the fact that the wider world thinks my body has no boundaries, I am a very touch positive person, but after this experience, I didn’t want anybody to touch me. Even the act of simply shaking hands later on that day made my skin crawl.
I shouldn’t have to get used to the fact that the world views me as an object, without boundaries and without the ability to consent. People should use their words instead of their hands. People should except no without getting in their feelings. Ultimately, if you wouldn’t do it to your friend, your sister, or wouldn’t want anyone doing it to you, you shouldn’t be doing it to someone with a disability. Think before you speak, ask before you touch, truly listen to responses and be willing to grow past bias and misconceptions. It really is that simple.

Lisa’s story – ‘She got very angry and lectured the whole subway car when I told her grabbing wasn’t okay.’

I’m blind. I usually use a guide dog, but also use a long white cane when I’m between dogs or the dog can’t work for some reason. I currently live in New York, but these episodes go back decades to other places I’ve lived, so I tried to specify where they took place.

When cell phones were still unusual, a man came up next to me (with a long white cane) on a DC Metro platform. He was talking on his phone, and he started holding my arm, without talking to me, but continued his phone conversation. I sidestepped away from him. The train pulled in and he ended his conversation and yelled at me about how he’d been helping me.

I was walking with my guide dog down stairs onto an NYC subway platform and someone took hold of my arm. I startled and asked what he was doing while I pulled away. The answer was that he was helping me. We continued in opposite directions.

I boarded an NYC subway and held onto a horizontal pole that was higher than my head. A woman grabbed me by the armpit. When I startled, she yelled at me about how crazy I was.

I boarded an NYC subway with my guide dog and was backing toward an empty seat when someone grabbed me from behind by both hips and tried to pull me down into the seat (or into his lap? Or what?). We ran the other way.

A JetBlue employee was supposed to be helping me to my gate at JFK airport. Rather than giving me verbal directions, she grabbed my guide dog’s harness handle and twisted it, in an attempt to change the dog’s direction. She could have really hurt the dog. I dropped the handle, found her hand, and removed it. In spite of this, when I filed complaints they argued with me about the sequence of things that happened.

I was waiting to cross a street in Queens, New York with my guide dog when a guy came up from behind my right side and started pushing me by my right arm. I stood still and raised the arm so he would lose his grip and pass by. He said nothing until he was mad I didn’t accept him pushing me out into the street.

People have tried to grab my metro card (which we use to pay for the NYC subway) when they saw my guide dog and that my first swipe didn’t work. They are always angry when I don’t let them have it, even though I don’t know them and they don’t speak first.

While sitting on the DC Metro with my guide dog, a woman standing in front of me knocked on my head (?!) to get my attention to ask me a question about the dog.

People often grab at me when I’m getting on and off trains. They often get angry when I take my body parts back from them and stay still until they stop trying to push or drag. Recently, someone pushed me by the small of my back with both hands.

I was using a long white cane and exiting a DC Metro station. The exit fence was partially closed. A guy came up behind me and grabbed both of my shoulders. I was very startled and he angrily told me he was helping me. I explained that the cane is a tool to detect obstacles like the partially closed fence. He was only interested in his own actions and how helpful they were.

A woman tried to grab my hand off an NYC subway pole and drag me toward a seat with no words or consent. She got very angry and lectured the whole subway car when I told her grabbing wasn’t okay.

Yesterday I was boarding a plane in Raleigh, NC, and the flight attendant’s hands were all over my shoulders and back. This was without permission, and when I asked her not to, she said she thought I was going to fall. I told her I was not inherently always about to fall. It’s really when focusing on navigating a small space quickly with a guide dog—these hands that are on me without my consent. At the end of the flight, as I got my bag out of the overhead, her hand was on the small of my back. It was just staying there. When I said please don’t, she said she wasn’t thinking about it, and her coworker said she was helping me. I said no, and asked them not to touch people without their consent.

Flying is really horrible!

I’ve been adding on to this document for weeks as more of them come to mind. Hopefully this is all.

Tai’s Story – ‘It happens with alarming regularity and I am often viewed as overreacting or rude if I take offence.’

I have had so many experiences of non-consensual contact as a wheelchair user I can barely remember them all. It happens with alarming regularity and I am often viewed as overreacting or rude if I take offence.

Someone once came up to me in the street and asked if I needed a push. When I replied that I didn’t they said “of course you do” and took hold of me like I didn’t know my own mind.

I have had countless incidents of people walking up behind me in the street and start pushing me without saying anything. It is terrifying as you don’t know what is happening and they refuse to believe you when you insist you don’t want help. I have had cause numerous times to shout at people to get off me, at which point they look at you like you’re the one with the issue.

I have had people not believe me when I’ve said I didn’t need their help. It really frustrates me when people can clearly see I am travelling around in public alone but still assume I need help. Not to mention the numerous times people ask if I need a push/try to push me then ask if I’m sure when I refuse, like I don’t know my own mind.

There have been too many times to count that people have leaned on my wheelchair or held onto it on busy public transport or in busy venues or crowds even though they would never lean on an able-bodied person. I have also been stepped over instead of asked to move over a bit so someone could get past.

I have also recently and many times previously had an experience in a bar when a drunk girl started trying to hold onto me and dance on my wheelchair like I’m an entertainment novelty. It’s one of the many reasons i don’t go out for nights out anymore.

I’m sure that these experiences are just the tip of the iceberg. I find that I now am on edge any time I have to be in crowded places or in public in general and end up having an aggressive reaction to any attempts to touch me because it never ends with people understanding that they are in the wrong or learning from it.

Sam’s Story -‘I’m a non-binary autistic person who is often ‘helped’ by people who mistake my wariness for helplessness’

I’m a non-binary autistic person who is often ‘helped’ by people who mistake my wariness for helplessness, but the worst incidence of non-consensual touching I have experienced happened to someone else.
I was marshalling at a graduation ceremony, and asked to provide one to one support to a blind woman, with a guide dog, who had just graduated in Creative Writing. She wanted her dog to accompany her as she crossed the stage to receive her certificate – something my colleagues seemed to interpret as ‘cute’ rather than practical, even after I explained the purpose of the guide dog. We did a practice ‘run’, and the actual ceremony went fine, although I had to gently redirect the dog twice, as he wasn’t familiar with the route and nearly went the wrong way off the stage. I explained things discreetly to the graduate as needed, whilst trying to respect the fact that this was her moment.
The correct route off the stage involved turning left, descending a few steps, then walking up the side of the hall back to the seats, so I informed the graduate that we were about to descend five steps of normal height, then continue straight ahead. One of my fellow marshals was stationed beside the steps to provide a hand to anyone who needed it, mostly people wearing high heels for the first time. I could see my colleague watching me closely, looking anxious, and for no discernable reason, she decided to grab the new graduate by both shoulders as she passed and squeeze. It was completely unhelpful behaviour and probably really irritating to the graduate.

Jemma’s Story – a lot people just grab my wheelchair without asking

I was at York station waiting for my son to arrive from Leeds. When i am suddenly grabbed from behind in my wheelchair and propelled onto a waiting train.I am protesting but the man misunderstands me and says” its okay honey ive got you! Once on the train i am tearful and he has marched off thinking he has done his civic duty.he actually waves at me as he gets off.i am now stuck on a train going God knows where.im frightened, disoriented and have chest pain due to my Angina.I finally get a railway worker to get me off again he is unpleasant and tells me i should of told the man putting me on the train i didnt need help.like i didnt try!
My son arrives to find me in tears and suffering chest pain.
This happens to me a lot people just grab my wheelchair without asking ;and push me across Roads;onto buses/trains into shops.as a partially sighted person this is very disorienting and upsetting.
I wish people would please ask first.