Wheelchair user trying to board a bus.

Why You Shouldn't Touch Someone's Wheelchair Without Permission

You wouldn’t grab a person’s walking stick…

You wouldn’t take a person’s cane from them…

So why do so many able-bodied people think it’s fine to move a person’s wheelchair without consulting the person who uses it?

A lot of people see me in a wheelchair as a chance to do a “good deed” of the day. To help the poor disabled person do something they obviously can’t do on their own… but generally, we can. It might take a bit longer, but we can.

While getting into position to wheel myself off of a bus, I might go back and forwards a bit to align myself. The bus isn’t exactly a large area; it’s a narrow pathway, I have to maneuver around bars, and sometimes people won’t even move a bag two inches to the left to make it simpler. Just because I didn’t manage to perfectly exit the bus in five seconds, that doesn’t mean I can’t do it. I can — it’s important to me that I do it, especially as I’m newish to my wheelchair (around 9 months now; when this happened I was in my first month).

Getting the wheelchair was scary, but it became a real rush when I got used to it. It wasn’t something that meant I failed like I thought at first, but rather a tool to give me back the mobility I had been steadily losing. It was something that would give me back some independence I was sorely missing! That’s why it’s important I do some things myself, especially on a bus or in a building as I can’t maneuver the wheelchair on pavements or outside, as my arms are too weak.

One day I was taking a few seconds to get off a bus, when suddenly a random woman grabbed my chair, dragged it sideways and pushed me towards the ramp and my carers. She spoke to my carers, “I thought I’d better help out.” She didn’t speak to me; she didn’t ask permission. I didn’t have enough time to even get my hands off the wheels before she moved me. She didn’t even consider me worth talking to about it, preferring to talk to other able-bodied people instead of me. I got a pat on the shoulder and a “there you go,” and that woman likely went away feeling like she did this amazing good deed. I was left deflated, sad and with a sore finger that got caught in the spokes.

Another thing to bus drivers: When a wheelchair user is looking to access your bus, your job is to get up and put the ramp down. No, I can’t make the gap. Not without potentially jarring the wheelchair and therefore, me. It hurts. Generally I try to avoid pain, not take pointless risks that can result in more pain. The ramp is there for a reason. Jumping the gap in a wheelchair isn’t safe.

Nothing else, except maybe to ask what stop they are getting off at, so as to ensure the disabled person doesn’t have to move until the bus is completely stationary.

Another little story. A bus driver, who many passengers on the bus claimed was amazing, seemed to have an aversion to the ramp. The gap was around half a foot… there was no chance. Having a smiling happy bus driver looking at me and repeatedly insisting, “Go on, you can make it!” was incredibly stressful for me. I just wanted to get on the bus, yet this was holding up everyone, and it was extremely embarrassing. I just wanted to vanish into the void as I was coming across as difficult by not “at least trying.” Having good hearing I picked up on a few people irritated by the hold up… irritated at me, not the driver.

The driver then got up. I was just thankful that finally, he was going to put the ramp down for me so I could get in the bus!

Sadly, I was wrong. He took hold of my wheelchair without asking, and pulled me back, tipping my front wheels off the ground. My wheelchair isn’t a fancy one, it’s a simple lightweight foldable manual chair. It’s not weighted to allow me to go onto my back wheels, so I was terrified. It was like when you tip a chair back and feel as though you’re falling. I was utterly in this stranger’s hands. If he dropped the chair I might have crashed backwards and been injured. I guess I was lucky on that point.

He then, still smiling and laughing, shoved me over the gap, quite harshly in fact. I was on the way to a doctor’s appointment, but this interaction hurt and completely exhausted me so badly that I couldn’t get the most out of the appointment. He ruined the entire excursion with these few actions.

He then went back to his seat, with several passengers commenting that he was amazing to have helped me, and so amazing that he’d be willing to do that for me. Again I was shaking, nervous and quite badly hurt. It took weeks for me to recover from that interaction physically and mentally. I’m nervous to leave the house now just in case.

Before you grab a person’s wheelchair and move them, ask if they want help. Be prepared that the answer may be no, and don’t push the point if it is. Sometimes I feel scared to tell someone to stop because they have such confidence in shoving me around. It’s hard to speak up and say no.

Wait for a yes rather than acting and expecting a no if you go too far.

As I said at the start: Would you grab a stranger and move them to a different location, unless they were in imminent danger? Would you grab a person’s walking stick off of them? Would you pull on a person’s crutch? If all of these are an obvious “No!” why would you grab a person’s wheelchair without permission?

Just a little add-on – if you see a wheelchair user with an able-bodied person, and you want to talk about the wheelchair or wheelchair user – talk to the person actually using the wheelchair. The amount of people who talk over my head about me is shocking. I’m just a person using a wheelchair, nothing more or less.

There are loads of awesome people out there who want to help, and you likely can help people often! I really don’t want to put people off helping others. I just want people to make sure the person needs and/or wants the help before you take the choice from them. I just want people to treat wheelchair users as the human beings we are.

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Image via Thinkstock.


Alisa's family.

5 Things Siblings of Adults With Developmental Disabilities Should Know

I am the sister of an adult with a disability, and the oldest in my mom’s family. I already know it will be my responsibility to take care of my sister, April, once our mother leaves earth. I am not looking forward to losing our mother, but I am well-prepared. As an ex-family resource coordinator and licensed future care planner for individuals with disabilities, I learned the importance of being involved in April’s life. Here is a short list of things siblings of adults with developmental disabilities should know about their lives.

1. Your sibling’s routine.

It is important to know your sibling’s routine, because it is a part of their daily life. Periodically ask your parents what your sibling likes to do throughout the day. Having a schedule with a time frame will benefit you tremendously in case of an emergency. It also helps if you or your parents are in an unexpected situation and a close friend or relative has to take your place temporarily.

2. Your sibling’s likes and dislikes.

Knowing your sibling’s likes and dislikes will help in avoiding conflicts. It takes time to get to know what someone enjoys. If you are no longer living in the household with your sibling, it is best to have a log of things that will comfort them. If they hate the color red, you need to know. If they enjoy a specific television show or music genre, you need to know. If they hate/love certain food or dislike a specific person – you need to know!

3. Medical information.

It is critical to know your sibling’s medical information — the doctors they visit, their medication, allergies, medical equipment, and medical directives. You need to know where to purchase products, their service providers’ information and how to reach their case manager.

4. Personal information.

It’s essential to know where to locate your sibling’s social security number and their parents’ information, especially if you have a different mother or father. Write down your sibling’s clothing size, shoe size, and products they use daily. Don’t forget to keep up with activity centers or camps – they have friends too and staying in contact with them is important to their social life.

5. A future care plan for your sibling.

We don’t know what the future holds; however, we can take care of ourselves and make adjustments. We have survival skills that we’ve learned throughout our life; however, our siblings may need help in that area. Your parents should let you in on the financial arrangements for your sibling such as special needs trust, housing, direct care support, case management, waivers, insurance and burial information. If you work on the plan with your parents and your sibling, the process will be easier. Keep the decisions person-centered at all times. Do what you think is in the best interest of your sibling from their point of view, not yours.

After collecting all this information, write it down/document it and save it to USB, cloud, folder or print it and keep it in a safe place or with a close friend. Remember to keep a list of relatives or close friends you can count on to stand in your place in case of an emergency, and don’t forget to tell them where the information is located.

Follow this journey on Alisa’s website.

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Girl in school hallway.

What My School's 'Equality Day' Missed About Disabilities

My high school prides itself on being cutting-edge, inclusive, and as diverse as a small-town school in Wyoming can be. After all, this is the Equality State. And for Wyoming Equality Day, better known as Martin Luther King Jr. Day, we celebrate this with a school-wide assembly.

As the daughter of white middle class Americans, equality is something I easily took for granted. Until I was diagnosed with a debilitating neuromuscular disease, and experienced ableism first hand, I never considered that equality is something the disability community is still fighting for in multiple areas — education, the workplace, and society at large.

The inequality is staggering.

So, when the school announced the Equality Day assembly would include the topics of “women’s rights, Hispanic-white relations, and disability awareness,” I was thrilled. While feminism and racism frequently make headlines, disability is more often shunted to the side, despite the fact that people with disabilities are the largest minority in the US. As a young disabled person living in a rural area, hearing my school would address the topic directly felt like an incredible gift.

That is, until I learned how they would address it. I was sitting in Spanish class 10 minutes into a grammar lecture when one of the school staff came in, pushing a classmate of mine in a wheelchair. The entire room turned to look at her. (Let’s call her M.) M is an active figure skater and dancer, so I my first thought was to wonder if she was injured. No cast, boot, or brace, though. I decided to ask her after class if she needed a hand with anything.

“What’s wrong with her?” one of the girls next to me asked. As much as I hate hearing this question when it’s about me (there’s nothing inherently wrong about disability), I was curious what had happened. But I reminded myself it was none of my business if M chose to use a mobility aid, and that I should be listening to the Spanish teacher.

By happenstance, our student body president was sitting next to us. “It’s for the Equality Day assembly,” she said quietly. “M is supposed to spend the day in a wheelchair to experience what it’s like to have a disability, so we can all learn about it.”

All thoughts of Spanish verb tenses flew out of my head. Experience what it’s like to have a disability? My vision darkened for a moment and I clenched my fists to keep myself from laughing at the absurdity or yelling at the injustice. I’m not entirely sure which.

For starters, a school day using a wheelchair can hardly teach someone what it’s like to live with limited mobility. Seven hours in an accessible building doesn’t even scratch the tip of the iceberg. Plus, M had adults helping her, was fully excused from being late to class, and could stand up and walk as soon as she needed to.

I do not use a wheelchair often. This is partly because the muscle weakness caused my disease affects my legs and arms equally, so a wheelchair is only an option when I have someone else to push me. Instead I use a cane, and on days when I can’t walk the short distances required to get to class, I stay home.

The stares, the rude comments, the unsolicited advice are all things I have learned to deal with as a young person with a semi-invisible disability. I get dressed on the floor, shower with a stool (when I have the energy), and struggle with high shelves and kitchen counters, all before 8 A.M. A quiet panic steals into my stomach when all the disability parking spaces are taken, when the elevator is broken, when an “accessible” entrance has several stairs and a heavy door. Counting spoons, planning out my day in excruciating detail, scoping out ramps and elevators and the nearest place to sit — there is so much more to having a disability than M will be able to understand after a single day.

During the entire class, she sat without participating, staring blankly across the room with a martyred expression on her face. She stage-whispered to her friend, “I want to die.”

At that point I nearly got up and left the room. Disability is not a way to get attention, and it’s not something you can switch on and off when convenient. It is something I have lived with day in and day out for years. I had to wrestle with the ingrained belief that my life was no longer as valuable, no longer worth living, because of my disability. And here someone who was charged with debunking that myth in front of the entire school was instead reinforcing it.

I appreciate that the school has decided to tackle disability alongside other issues of equality, especially knowing not everyone has the luxury of such an inclusive environment. I’m incredibly thankful, and proud. I was excited that the school wanted to broaden students’ perspectives and raise awareness for the challenges students with disabilities face. But to me the manner in which the school administration and student council decided to do this was incredibly offensive.

The worst part was not even that they decided to invent a disabled student for a day, or that the student tasked with this role had a shameful lack of conscientiousness about it. The worst part was they had completely ignored the school’s actual disabled students. There are students with learning disabilities, partial deafness, blindness, chronic illness, chronic pain, and more. There are students with power wheelchairs, crutches, feeding tubes, and hearing aids. I have used a cane for three out of my four years here. I know every member of the student council by name, as well as the administration. And yet they decided to ignore us all.

Despite the fact that the school district has funded bilingual programs, an alternative high school, and a laptop for every student, it has yet to improve the public high school’s one glacial-paced elevator and hire a full-time nurse for 600+ students. I had to lobby for every classroom accommodation, defend every doctor’s note, and even explain my parking placard. Equal opportunity for people with disabilities is near and dear to my heart.

So please, do not speak for us — listen to us. We have a lot to say, and a lot to contribute. And we’ve been here the whole time.

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Lead photo by Thinkstock Images.

Google doodle honoring Ed Roberts

Google Doodle Honors Disability Activist Ed Roberts

If you’ve searched for anything using Google recently, you might have noticed the Google Doodle – the illustrations that replace the Google search logo on holidays – is particularly special. On Monday, January 23, Google commemorated what would have been the 78th birthday of disability activist Ed Roberts by featuring an illustration of Roberts lecturing in front of a classroom.

Roberts, considered an early leader of the disability rights movement, became paralyzed from the neck down at the age of 14 after contracting polio. Roberts’ first notable activism came when he was in high school and was denied his diploma for being unable to complete gym and driver’s education classes. His petition was successful, and after graduating high school, Roberts became the first significantly disabled person to attend the University of California, Berkeley. During his time at Berkeley, Roberts founded the Physically Disabled Students Program and graduated with both a bachelor’s and master’s degree in political science.

“I watched Ed as he grew from a sports-loving kid, through bleak days of hopelessness, into self-acceptance of his physical limitations as he learned what was possible for him to accomplish,” his mother, Zona Roberts said. “His years at [University of California, Berkeley] were great ones as he both enjoyed his college status and got in touch with his leadership qualities. He took great pleasure in watching people with disabilities achieve greater acceptance.”

Continuing his advocacy work, Roberts became the director of the California Department of Vocational Rehabilitation in 1976, and in 1983 co-founded the World Institute on Disability. Roberts died in 1995 at the age of 56.

Woman sitting in a field looking at the horizon.

Learning to Accept What the World Sees as Broken

I can’t count the number of times I’ve been in a grocery store and a young child has turned to their mother and asked, “What’s wrong with her? Why is she in that?” By “that,” they mean my wheelchair.

Doctors have tinkered with my body, trying unsuccessfully to alleviate my constant physical pain. Their eyes tell me they believe it’s hopeless. When I got sick with my eating disorder (ED) I struggled to find treatment at first because no one could accommodate my physical disability. I was too difficult, too involved, too “broken.” Recovery is about returning your body to health. But what does recovery and body acceptance look like with a disability (cerebral palsy)? When the world sees you as broken, how do you learn to accept yourself?

I believe it helps to focus on what your body can do. This is hard because most of the time the world will focus on your limitations if you have a disability. The challenge is to focus on your ability. Focusing on your ability does not mean focusing on the strength of your appendages. Instead, try to focus on what you did today with your mind, words, heart, or even your smile. Everyone has a heart and a smile; a little love and a smile can go a long way.

Remember, your scars show strength. Every aliment brings forth a scar and that scar gives you a story to tell. If you’re reading this, I believe it’s a blessing; you are alive, strong enough to be reading these words, brave enough to have faced the world today. Congrats!

It’s OK to give your body a break. The world constantly tells us to push ourselves the brink of exhaustion. We are told we have to keep up with our classmates, coworkers and sometimes even complete strangers. But it can be dangerous for those with chronic illnesses and disabilities to function at such a high-speed pace constantly. I guess you could call this the ultimate definition of self-care. But remember, you don’t have to knit, paint, take a bubble bath, or go for a run to practice self-care. Self-care can also be napping! So don’t be afraid to catch some Z’s; your health is more important than any deadline or social event.

I feel it’s important to share your story. Do not be afraid to talk about your condition in public, especially if it is invisible. People are often curious, but afraid to ask. Ignorance breeds misconceptions. If we teach our family, friends, coworkers and the world about our disabilities, we can maybe be one step closer to teaching the world how to accept “broken” bodies. Even better, we are one step closer to teaching world that our bodies aren’t broken. And then maybe, just maybe we can believe it too.

We can change the world; but it must begin within ourselves.

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Lead photo by Thinkstock Images.

Financial calculations.

What I Wish Colleges Understood About Disability and Financial Aid

All students face challenges and come across difficulties when it comes to their education and learning. As a disabled student who has both neurological and rheumatic conditions, I can easily say that the biggest adversity I face is inaccessibility. When I wake up on a college day, the first thing that crosses my mind is the pain I have to put myself through to get there. I dread the travel, complications caused by weather, and the fact that my college has poor disability access throughout its campus. And I know I’m not alone.

Under the U.K. Equality Act of 2010, all universities and colleges are required to make reasonable adjustments so disabled people can access their services and campus grounds. It is illegal in the U.K. for an educational system to treat disabled students unfavorably. Despite this, research completed by the Muscular Dystrophy Campaign shows that 40 percent of university inter-campus transport is inaccessible to disabled students, and 30 percent of university social and leisure facilities are not accessible to students with mobility problems.

Across America, an average of only 63 percent of disabled students were able to graduate from high school in the year of 2014. This rate was roughly 20 percent lower than the national average. In Nevada, Georgia and Mississippi, students with disabilities graduated from high school at half the rate of those without. In 20 states, the graduation rate for students with disabilities is lower than 60 percent.

Speaking from personal experience, I can firmly say that the college I attend does not have suitable disability access. There are three floors in total, with a lift that is difficult to get to and only reaches the second floor. This means that disabled students are left in a lot of pain from multiple flights of stairs, few of which have support rails or banisters. There is no wheelchair access to the main reception of the college and other entrance points, nor are there any ramps. There is no wheelchair route inside of the college either. You are expected to get out of your wheelchair when you arrive, go up steps and inclines to get into the college, and then you must spend the rest of your day without your wheelchair. People who cannot walk can’t get into the college at all, and it leaves part-time wheelchair users without the safety of their chair, having to go through pain and fatigue.

There aren’t directions or signs throughout the college for those with learning difficulties, and some of the few messages which are available aren’t in multiple formats for people with different needs. When getting around the college, you’re met with steep inclines, heavy doors without automatic systems, flights of stairs and narrow hallways. It feels like a dangerous maze. This leaves students with muscle weakness needing supervision to get up a single flight of stairs, and somebody to open doors for them. A walker is not suitable to be used, nor are crutches, due to the size of certain corridors and the leveling of the ground at some parts of the college. And, of course, the dreaded stairs. My independence is taken away and there is no access that allows disabled students to feel safe. There are countless times I’ve been left breathless, hurt, struggling and sore at the end of my day from the fact that students with disabilities and limited mobility are not cared for. Flares have been triggered and I’ve been without my regular mobility aids.

On the bright, lovely, sunny side, one thing comforted me when it came to accessing college. When I started my studies, I was given support regarding finance – a lump sum paid into my bank account that paid for my travel to and from college for the first term. Each week I would purchase a bus pass, which gave me unlimited travel for seven days. This allowed me to get to college on my timetabled days, as well as any other days I could manage to use the library, access college resources, and attend special events and college catch-up sessions. This was a huge help to me, as I could use my own savings (that come from my disability benefit) to cover any other health-related or college costs, including taxi fares to offsite locations, splints, braces and bandages, self-treatment for any injuries, therapy for during flares, support and aids, and books and stationary, to name a few. Originally, I would not have been able to afford these things as I would have only had enough for the travel to college, since I am from a low-income family.

However, this financial help only remains available to those who keep their attendance above 90 percent, no matter what the reason for absence.

I was unable to do this. Making my way around a college with poor disability access, in a busy main city, during the season when my conditions are at their worst, took its toll on me. I missed a lot of my timetabled days and completed a lot of assignments and work at home.

Anybody with a chronic illness, disability or medical condition knows you are often faced with unexpected circumstances. Things don’t always run smoothly. You could suddenly start experiencing a flare, medication side effects, or your current medication could randomly stop working. You could be in need of an emergency doctor’s appointment. Most conditions vary day-by-day, so what you can do changes very quickly. You could be left housebound, or unable to manage and balance personal care as well as your education. My point is, you don’t know what you might have to face. And if you’re having to push yourself, or if you’re having to travel to a place without the disability support you need, you will probably be left feeling at your worst.

That’s why I’m writing this article. Because I want people to know that. I want my college to know that. I wish my college would have considered these unexpected circumstances before they took my student financial aid away.

My second term starts this new year. I am going to fight to get my aid back, so I can complete my course and care for myself to the best of my ability. In the meantime, there is a lot of support I won’t be able to afford, and a lot of ways I will continue to struggle. So I will search for a new bright, lovely, sunny side and hope that one day, all colleges and universities will be thinking about their disabled students when determining how to qualify for aid.

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Lead photo by Pixabay

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