Accessibility: Why living with a Spinal Cord Injury is so Hard in Public Settings

As someone who has a spinal cord injury (SCI), I always tell people that living with an SCI in your own home is not that difficult when it is accessible. Instead, it is existing in public settings with an SCI that seems to make life with an SCI difficult.

When you are in your own home, you feel comfortable. You do not really feel different; you are able to do what you want in the ways you need to do it. You have a space set up for you, and you feel free to be who you are.

However, once you step out the door, everything is different. Unexpectedly, you cannot go for a stroll alone without multiple people stopping to make sure you are okay, even when you do not appear to be in distress. People begin abruptly stopping you everywhere you go to ask you what happened or feel the need to tell you how inspiring your smile is. Suddenly, people stare at you but avoid getting close to you. Without warning, everyone starts to think that anyone with you is your caregiver. Rather than talking to you, people talk to the person with you about you, or worse, they talk to you like a child. The list of changes goes on and on.

For example, there are times that I am going for a workout around my neighbourhood, or I am practising wheeling up and down hills/ramps, and I feel proud and powerful, then someone stops their vehicle to check if I am okay or close to home. At that moment, I go from feeling like the independent, vibrant person I was and still am to feeling like no one sees me and instead sees a fragile wheelchair user who could not possibly venture out on their own. Many people think they are kind in these moments, but they should take a minute to adjust their perception.

If I am not moving and look like I dropped something, or I am slumped over in my wheelchair or trying to yell for someone, please stop and ask if I need help. However, if I am actively wheeling, regardless of how much I appear to be struggling to you, or tired I may appear to be, or I am stopped and looking at my phone on my lap or grabbing my water bottle, you have my permission to keep driving. Please, do not stop me to ask if I live nearby, ask about my injury or why I use a wheelchair, cheer me on, or ask to help.

This blog will tell those who are a part of the non-disabled community why living in public as a wheelchair user makes life challenging for us and provide my fellow wheelchair users advice on how to make spending time in public less challenging. However, I want to point out that no one should need the advice I will give because society needs to change, not those of us who live with an SCI.

The reality is that anyone can sustain an SCI or receive a diagnosis that will lead to needing a wheelchair or walker. Therefore, I challenge you to be open-minded to what I tell you in this blog and ask yourself, “If I needed to use a wheelchair, would I want to be treated with respect and have true equity in society?”

Why Existing in Social Settings is What Makes Having a Disability Hard

Ableism

I made ableism number one because it is what drives each issue I will be discussing below. Whenever people argue with me about whether privilege actually exists, I get to tell them that I know what it is like to lose privilege as proof. Due to ableism, I knew what it meant to have less privilege due to my disability before I knew what it meant to have less privilege because I am a cisgender woman.

Honestly, after over nine years of living with an SCI and using a wheelchair, I can say that ableism is the most hurtful and irritating thing I seem to have to deal with. My loved ones have to deal with it as well. My sister has to watch me get stopped in the mall and be asked by people if they can lay their hands on my legs and pray for me to “be healed.” My friends have to watch and help me when someone grabs me and starts pushing me through the crowd at the club without asking because I cannot yell loud enough or stop them. My partner or male friends have to deal with people praising them for being with me. These are just a few examples. Frankly, ableism kind of makes me want to run people over with the wheelchair I use. Luckily, I avoid choosing violence in my life.

Additionally, due to ableism being rampant in society, I have formed my own internalized ableism and severe social anxiety I need to fight daily. I continue to go to therapy to deal with these issues, among others, and I have improved at altering my perceptions and understanding my worth. However, facing ableism from others makes fighting internalized ableism and social anxiety more complicated and frustrating.

In society, for so long, people who have disabilities have been hidden away, pitied, or used by non-disabled people as their toys for inspiration. Well, we refuse to be hidden anymore. We definitely exist everywhere, and that is okay. Difference makes people beautiful, and you are missing out by ignoring our voices. We do not need your pity or need you to “fix” us. Seeing us happy and enjoying life is not inspiring. If I hear someone say they are not ableist and then tell me that seeing me still being happy after an SCI inspires them and makes them wonder how they could ever be unhappy, I shake my head. My dear, that comment is ableist.

The truth is, nearly every non-disabled individual has exhibited ableist behaviour or beliefs at some point, including me, before my SCI. Additionally, many people who have a disability have exhibited ableist behaviours or beliefs in some way in certain moments. Whether outward or internal, ableism lives inside all of us to some degree at an implicit level.

People have created an ableist society by:

• Hiding those with disabilities
• Misrepresenting the disabled experience in media
• Educating people with messages that say living with a disability is depressing, makes someone worthless/less than, incapable of doing anything or independence, and deserving of pity.
• Refusing to admit the existence of ableism and privilege
• Building spaces that are not accessible

However, we may begin to create a more equitable and understanding society for everyone by:

• Admitting the existence of ableism
• Educating ourselves
• Listening to the voices of those with disabilities and increasing their representation in the media.
• Providing better education regarding disabilities from an early age.
• Building accessible spaces

From one adult to another, we can do better, and we should. I say this with all the love in the world. It is 2021, and I refuse to continue blaming ableism on miseducation in adulthood because education sources are now beginning to be everywhere. The only thing you are required to do as an adult holding ableist views is educate yourself with an open mind and actively internalize what you are learning.

I recognize you are not a bad person, but the ableist behaviour you may exhibit is not acceptable. However, if you refuse to acknowledge your ableist behaviour and miss the opportunity to grow from a new understanding, then you may be kind of an ableist dick.

Here are a few tips on how to become less ableist:

• Learn the difference between pity and empathy.
  • Empathy involves you recognizing and sharing the emotions of someone. Empathy requires you first seeing an individual’s situation from their perspective and then sharing their emotions regarding their experiences. You try to understand someone’s perspective by gaining knowledge about who that person is, what their situation is like for them, then imagining yourself in their position. In comparison, pity is often paternalistic or condescending because it implies your emotional position is higher than the individual you pity. Pity is a feeling of discomfort that you have for the distress or perceived distress of another individual. Pity involves you feeling a sense of sadness in reaction to a person’s experience rather than trying to have a shared emotional understanding of the individual’s experiences and emotions associated with their experience. Empathy requires effort, whereas pity requires minimal effort.
• See the person before you see the wheelchair they use. My disability is a part of my identity, but it does not define all of me.
  • When I give you this tip, it does not mean that you then say, “I don’t see disability.” This statement is silly because you see disability, and even if it is not visible, it does not mean it is not there. Instead, it is essential that you recognize and discuss the unique history and experience of those who have disabilities while also not seeing them or treating them as fragile and less than.
• Correct yourself when an ableist thought pops into your head. I live with a disability, and even I still need to correct myself. It is okay.
• Demand for better accessibility in all spaces.
• Vote for leaders who increase accessibility, not those who ignore issues regarding the disabled community or take rights away from those who live with disabilities.
• Introduce your children to people with differences and teach them about ableism.
• Become friends with people who live with all different kinds of disabilities.
• Follow influencers who live with disabilities and learn from them. (Short list below)
• Take classes regarding disability rights.
• Stop staring, please. The only people who get away with staring obsessively and coming to ask me about my chair are young children. If you are an adult, look, check out my chair if you want, say hi, and then go about your day.
  • I know the wheelchair I use looks pretty damn badass, so check it out if you want. Ask me about it if your question is regarding the chair and not why I use it, then let me go about my day. However, staring at me without blinking for a long time is not appreciated.
• Be honest and apologetic when you make a mistake or did not know what you did/said would be upsetting. Then, ask the person if they would not mind explaining how you may do better next time. The person may not want to explain, and that is okay. Sometimes a willingness to admit wrongdoing and a genuine expression of wanting to be better mean the world. Everyone makes mistakes, and that is okay as long as you try to do better tomorrow.
• Shovel your driveways!

Inaccessibility

Many people are surprised when they see a wheelchair user out and about. You may believe there are far fewer of us. You may not realize that you do not see many of us because many places are not accessible.

There are so many things that I want to do that I am entirely capable of doing, yet I often cannot do them due to inaccessibility. My friends, who do not use a wheelchair, often go out together to different places, and I do not even get asked because the place they are going is not accessible. Furthermore, these friends often want to go somewhere or do something when we are together, and we cannot because the place is not accessible. It sucks to feel left behind or feel like my friends who do not use a wheelchair are disappointed we cannot do something and would have more fun without me due to inaccessible places.

Inaccessibility hurts and makes you feel unworthy. It makes you feel like you should not have friends, so they do not have to deal with these issues. It results in people like me missing out on many beautiful memories or significant milestones because inaccessible spaces limit us.

Frankly, I find it ridiculous that so many spaces still are not even mildly accessible in 2022. It is challenging to make every space completely accessible for every person. However, there should be:

• Ramps to enter an establishment if you have stairs, and those ramps should be up to code.
• It would be best to have transitions in doorways so a wheelchair user may easily get over without being too steep.
• More parking stalls should be large enough for a wheelchair ramp to come out of the side of someone’s vehicle.
• There should be buttons to open doors and quickly fixed when/if those buttons are not working. Door buttons should also be on public bathroom doors and other doors inside a public establishment. At the very least, doors should have door levers rather than doorknobs to help those with limited hand function open the door.
• Elevators should have buttons at a height that those using wheelchairs can reach.
• Tables should be tall enough for a wheelchair to roll underneath. If your establishment has high bar tables, get a few shorter ones and reserve them for people using a wheelchair.
• Shovelling snow and clearing ice from all sidewalks should be mandatory and better enforced.
• Curbs should have a smooth and flat transition to the sidewalk, so the front wheels of a wheelchair are not stopped when someone tries to wheel from sidewalk to sidewalk.
• Hotel beds in wheelchair-accessible rooms should have room for a lift to roll under the bed.
• There should be at least one sink at wheelchair height to wash our hands in public bathrooms.
• The chairs at sinks at the hairdresser should be moveable so people who use wheelchairs can have their hair washed at the salon.
• There should be ceiling tract lifts in some dentist offices, doctor’s exam rooms, emergency rooms, wellness centres (in other words, spas and similar businesses).
• Gyms should have accessible equipment.
• Parks and playgrounds should be wheelchair accessible.
• Schools should be wheelchair-accessible in all areas so everyone may easily get involved in clubs like theatre or band.

The list goes on and on…

An Inability to Follow Accessibility Laws or Avoid Using Spaces Designed for Wheelchair Users

Parking

This point is a big one. Let us first discuss parking! If the parking spot has a blue sign screaming “ACCESSIBLE PARKING” or has blue parking lines or a blue parking meter, it is wheelchair parking only. I know how tempting it can be to park in one when you cannot find a space or when it is cold, or you are running late, and you are “just going in for a minute.”

However, these spaces are there for a reason. That reason is for people who have a disability to park in because among the many reasons:

• We do not have the same ability to walk down the block or through the snow.
• Many of us risk falling, have temperature control issues, or vehicles that only these parking stalls are big enough to use independently.
• Also, if you have not tried to grip your wheelchair rims and push yourself when it is brutally cold outside, raining, muddy, or with limited hand function, you cannot understand how difficult it can be.
• Other drivers are not looking for people at wheelchair height, so we risk getting hit in the parking lot.

Additionally, accessible parking stalls are larger, so a wheelchair user has room to transfer from wheelchair to vehicle, or so a lift/ramp of some kind has room to fold out of the side of the vehicle and not hit the vehicle next to it. So, follow the parking lines and do not try to squeeze right next to the vehicle in the enlarged parking stalls. They are designed that way for a reason.

You see, I may put all the work I can into being able to wheel myself, drive independently, and pay ridiculous amounts of money for an accessible vehicle I can use independently. However, none of that matters if someone does not follow parking lines.

In this case, I will need to sit by my vehicle until you come to move yours or go back into the building to have staff find you and ask you to move, or I can be really nice and call you a tow truck instead, and you will have to pay for it.

It is much easier and reduces my fear of going out independently if we both follow these rules and go about our day.

Bathroom Stalls

I assume you know that most public bathrooms have several smaller stalls and one or two large stalls with a picture of a wheelchair on the door. Again, I know the bigger stalls might be more fun to use, especially when you are younger. I admittedly always used to use the wheelchair stalls before I became a wheelchair user myself. I cannot tell you why, but I did, so I get it.

However, these bathroom stalls were made large for a reason. I cannot even try to fit in a typical stall designed for those who do not use wheelchairs, let alone fit myself and my caregiver into one. So, let us make a deal, I will not use stalls designed for you, and you will not use stalls designed for people like me.

If I have to have my caregiver help me undress and catheterize/pee in the main bathroom area again, you may be at risk of facing me with a full bag of urine. Not only do I lose any sense of privacy, but there is no place for my caregiver to sit, and I am in the way of everyone else trying to wash their hands and come in and out of the bathroom.

Additionally, for those with an SCI, female genitalia and require transferring from the wheelchair onto the toilet to pee, we need room to transfer and the grab rail to hold ourselves up as we catheterize. Transferring onto a commode wheelchair (a chair for toileting and bathing) is difficult enough. However, without room and support provided by something like a grab rail, these individuals may no longer be able to catheterize themselves. Also, forcing us to wait when we need to urinate risks bladder infections, incontinence, and autonomic dysreflexia, which can cause stroke, heart attack, and death.

Therefore, unless you have a valid excuse for using wheelchair bathroom stalls when you do not use an assistive device to get around, like, “I have been diagnosed with extreme, debilitating, claustrophobia,” please do not use them.

Tips for Those Who have an SCI on How to Deal with the Issues I Discuss Above

• Be unapologetically disabled and tell anyone who wants to treat you as less than or with pity due to your disability that they can respectfully piss off.
• Never feel like you are in the way or do not belong. So many spaces, especially in retail stores (I am calling you out here, Ardene’s and similar stores), are either over-packed or made too small, and I know it is hard not to feel like you take up too much room. However, you have an equal right to be in public spaces. The issue is the establishment, not that the wheelchair you use takes up “too much” space.
• If you enjoy doing so, educate others about the issues I have discussed above and the many others that I do not touch on. However, do not waste your time and energy trying to educate someone who is not actively listening or refuses to be open-minded and respect your truth born from lived experience.
  • Know when and how to pick your battles and turn a negative experience into a teachable moment.
• Do not allow yourself to feel embarrassed, ashamed, less than, or unworthy when you and your loved one’s face ableism or inaccessibility. I know it is hard not to feel crappy about these moments, but the responsibility lays on the shoulders of the individual or establishment and society, not you. These events are not your fault. You deserve to be treated with respect, you deserve equity, and there is nothing wrong with you or your SCI.
• If you are newly injured, start educating yourself early on about how misguided the ableism you may have been taught before your SCI is. Holding an ableist perception about the SCI, you have sustained or looking at your injury through an ableist lens only serves to hold you back from your full potential and make your rehabilitation journey harder for you. Connecting with peer mentors who have had their SCIs for a while or following influencers who have SCIs will help you in doing this re-education.
  • There are many different influencers who have SCIs at all different levels! A few notable influencers include:
    • Richard Corbet:
      • YouTube: Wheels2Walking
    • Alyssa Higging:
      • Instagram: wheel.life.in.a.wheel.world
    • Gem Hubbard:
      • YouTube: Wheelsnoheals
    • Chris and Charisma:
      • YouTube: Roll with Cole & Charisma
    • Sophie Malthus and Indy Henman:
      • YouTube: Soph & Indy
    • Corey:
      • YouTube: Corey O.
• Demand for equity and accessibility. Vote for people who are also going to demand these things for the disabled community.
• Try to avoid aggression when you face ableism and inaccessibility. Aggression not only does not serve you very well, but it also often lessens your ability to get the true meaning of your point across to the person being ableist or establishment that is inaccessible. As I mention above, many people are unaware that their behaviour is ableist or think it is kind. Therefore, although anger is warranted, allowing only outward signs of aggression to come out towards these individuals does not really inform them about why what they did, said, or think is wrong.
• Surround yourself with a good support network of non-disabled people who either correct their ableist thoughts and support your equity or those actively trying to learn and grow to be a good ally to the disabled community.
• Find yourself a good network of friends from the disabled community. Ableism, inaccessibility, and inequity are exhausting. So, having friends who understand you, with whom you can openly and freely rant about some of these issues, is cathartic and incredibly helpful. There truly is nothing like sitting in a room full of others who have an SCI, talking, and feeling like you have a community that understands you for the most part. The only way to describe it is to feel like you are home. Non-disabled friends who have many friends with disabilities and genuinely see you as an equal often make you feel like you are home, too.
  • In these spaces, try not to compare yourself to others with similar or lower-level SCIs. Doing so disconnects you from feeling as though you are a part of a community and may cause you to be self-conscious of your recovery journey and put you in competition with your peers.