The Importance of People First Language

Words matter. Words label. Words explain. Words create perception and misperception. Words can hurt. Words can limit. Words can lift. And words can convey powerful messages. Within the disability world there has been a shift  towards “people first” language, whereby the person comes first and the disability comes second. This change in language is important as people with disabilities are not solely defined by their disability, just as you are not solely defined by your gender, sexuality, heritage, marital status, etc. People with disabilities are people first, and they should be recognized as such. People first language is important because it humanizes disability. For too long people with disabilities have been marginalized, dehumanized, devalued, and prejudiced against. People first language is a reminder that the disability does not define the person, that the person is not “less than” others due to their disability, and that we are moving forward to an age where disability is neutral, neither good nor bad, but rather an adjective, a descriptor of an aspect of a person, just as gender, race, and age describes aspects of a person.

How to use people first language:
People first language is as it sounds, the person comes before the disability. Instead of saying “autistic child” say “child with autism”. In place of saying “wheelchair bound” (which should never be used) say “person who uses a wheelchair”. Instead of using the term “disabled people” use the term “people with disabilities”. The disability is secondary. It is not the defining attribute, and as such the person’s pronoun or name should come first.

Criticism of people first language:
Some find people first language to be overly wordy, repetitive and awkward. For some it is easier to utilize terms that have long been applied, and which are shorter in length, but part of the purpose of people first language is the conscious understanding that the disability does not define the person. It may be awkward and harder to use people first language, at first, as are all new habits, but people first language holds power, it helps to demonstrate that people with disabilities are people first and not solely defined by their disability.

Some people disagree with the constant shift in terms, and refuse to use the “newest” change as it will just change again. It is true that in the disability world, terms often change from generation to generation. Handicapped is no longer acceptable, neither is retardation. As our understanding of disability moves forward, so too does the language. Language can demonstrate progress, and people first language is a step forward in humanizing people with disabilities, and working to ensure that the person is seen before the disability. It may be that we switch to a different terminology with the next generation, or maybe we stop identifying people by their disability, but whatever comes next, people first language is the current respectful terminology.

One last note:
There are times in life when categorization is necessary, but most of the time the focus should be on the person. During the disability awareness seminars that Citizens for Accessible Neighbourhoods delivers, we often ask a bonus question: Hannah uses a wheelchair, how should one refer to her? The answer is that one should refer to her as Hannah. When people have disabilities, especially visible disabilities, the person they are is often overlooked for the disability they have, but Hannah is Hannah; her disability can be a box she ticks on a form for medical or governmental reasons, it can be a classification that helps in getting medical assistance, it can be a describer for understanding her accessibility issues, but for a lot of Hannah’s moments, her disability is secondary, and she is Hannah. Please remember this, and see people with disabilities as people first. Hannah should be referred to as Hannah, as that is who she is. Her disability may be a classification but so is age, gender, culture, and sexuality, and we don’t go around introducing people as “Jerry the senior”, “Christina the woman”, “Sayid the Persian” or “Judy the bisexual”. Use the classification of disability if necessary, but keep the person in mind at all times.

Society has come a long way in our treatment, understanding, and perceptions of people with disabilities (even if we still have a long way to go), and it is important for us, as a society, to demonstrate that progress through our language by utilizing people first language.

Misinformation and Magical Thinking

Recently I saw a post on Facebook of a link to a news item. The piece was about a woman who “defies odds, learns to walk again after spinal cord injury”. The piece explains that she did so through “faith and fortitude” making “a liar” of doctors. As a person who lives with a disability, these kind of headlines frustrate me to no end, but I decided to give the piece a chance, and so I watched it, as well as read the attached article.

(To read and watch it for yourself go to http://www.myfoxorlando.com/story/26389352/woman-defies-odds-learns-to-walk-again-after-spinal-cord-injury)

Before I share my thoughts on the news item, I want to be clear that this post is not about the individual in the piece, but rather about the way the news is presented, often through misinformation, and how this leads to magical thinking.
I am not a spinal cord injury expert (SCI), and my disability is not a SCI, but I have worked with SCI organizations and individuals through my organization Citizens for Accessible Neighbourhoods. And I know that these kind of pieces are frustrating for people with SCIs because many of them would like to walk again, and these pieces make it sound as if they could walk again, if only they worked hard and had faith. This piece, however, has one glaring omission, and that is whether this woman had a complete or an incomplete spinal cord injury.

A complete SCI indicates a complete lack of sensory and motor functions below the level of injury, whereas an incomplete spinal cord injury is when the ability of one’s spinal cord to pass messages to and from the brain has not been totally lost, and that there is some movement and/or sensation below the level of injury. Some people with incomplete spinal cord injuries are able to walk again, usually with the aid of a mobility device such as a walker, forearm crutches, or a cane. I highly suspect that the woman in this news piece has an incomplete spinal cord injury. It doesn’t mean she wasn’t told she couldn’t walk again, and it doesn’t mean that she hasn’t had to work extremely hard to get to the point she is at today, but it does mean that the reporting, by omitting this fact, has lumped together two groups who have extremely different possible outcomes.

Why is the distinction of complete or incomplete SCI important? Because it would have been a miracle if she had a complete SCI, and the information would be front and centre everywhere: newsprint, radio, television, and social media, nationally and internationally. However, people see news stories such as this one, and assume it must be true, without understanding that there may be facts missing, and then they apply that information to others. I cannot tell you how many times I have been told that if only I try this treatment, or praying, or this salve, etc., that I will be cured. This is magical thinking. And this thinking comes about from these types of news stories.

Why is magical thinking a bad thing? Because it is false, and it is upsetting for people to believe that someone with a disability could be cured if only they tried harder, tried a specific product, or had faith. The reality is that those with disabilities, chronic pain and/or SCIs work hard, do what they can, and try everything possible to improve their health, mobility and lives. Unfortunately, it doesn’t always work, or if it does, success is found in more realistic, and often less noticeable, perimeters, such as improved muscle mass, circulation, range of motion, etc. Magical thinking minimizes the successes that are possible. This story lumps all people with SCIs together, and states that with fortitude and faith a miracle is possible, and some of the viewing public will believe that.

People watch stories about miracles and they want to believe. I certainly understand that. I once had an entire cupboard filled with so-called miracle cures, but none of them worked. I fell for it, and I understand why people want to believe in miracles, but I get very frustrated when people apply their desire for miracles, their magical thinking, to others, especially strangers.

In closing, I ask two things of you going forward. The first is to question what you see in the media; do they offer all the facts, are they using words like miracle and cure, would a miracle only be shown to a small audience, etc. The second is to not apply magical thinking to others. Don’t assume people who have disabilities just aren’t trying hard enough, or praying enough, or using the right product. And understand that on a daily basis people with visible disabilities are often told by complete strangers about products, therapies, and other ideas that could “cure” them. I can’t even count the times that I have had people approach me to pass on information they saw online, in the paper, or on TV, and been told that if only I did (fill in the blank) that I would get better. I appreciate people wanting to help, but first of all, don’t assume one isn’t already, or hasn’t already, tried product after product and therapy after therapy. Secondly, realize that often the news item you saw used magical thinking to make you believe it works for everyone. If you still feel a burning need to suggest something, don’t assume a person hasn’t tried it, and just quickly tell them the name of the product or therapy and move on. I have had people trail me around seawalls and museums trying to convince me to use something, and not giving up until I agree or become rude. If people with spinal cord injuries could walk again, there would be a line-up fifty kilometres long, not a small news piece. Appreciate that this woman has made tremendous progress, but keep in mind that her story is unique to her, and not applicable to every other person with a spinal cord injury.

Shameful: New Value Village Excludes Accessible Parking Spaces

Like many Value Village customers, I was quite excited at the prospect of visiting their brand new location, a 30,000 square foot store in Queensborough, New Westminster. Upon my arrival I was utterly dismayed to pull into the brand new parking lot and see that Value Village has zero accessible parking spaces. I was shocked that a company would exclude accessible parking. This carries a very strong message to consumers with disabilities, stating “you money is not valued here”.

New Value Village Location

I spoke with a store manager, to find out why Value Village, particularly a brand new Value Village, chose not to include accessible parking spaces in their design. She told me that New Westminster only requires two accessible parking spaces per parking lots of one hundred spaces or less, and the vacant store next door to Value Village has two accessible parking spaces. I was dumbfounded. Value Village felt that the spaces in front of a store next to them was enough for the parking lot, so they did not add any for their own customers.

The purpose of accessible parking spaces is to offer parking as close as possible to the entrance for consumers who are unable to walk long distances, or as a safety measure for people with mobility devices and/or working dogs. Value Village’s decision to have the store next to them fill the quota for the parking lot, and not offer any for their own store, and their own customers, is a strong indication that they are not truly considering their customers with disabilities, their walking abilities or their safety. And that is truly shameful!

Accessible Parking at Adjacent Business

Twenty percent of British Columbians self-identify as having a disability. In addition, our aging population is filled with people who experience age-related health issues. Both of these groups are consumers. Both of these groups require access to parking close to the entrances of stores. Both of these groups are being given a very strong message by Value Village’s conscious decision to exclude accessible parking at their new location.

The shopping area in Queensborough is filled with big box stores, and the majority offer many accessible parking spaces. Next door to Value Village is Lowe’s Home Improvement Warehouse. Lowe’s provides their customers with disabilities with ten accessible parking spaces at their front entrance, and another eight at their garden centre. It is obvious that Lowe’s values their customers with disabilities. The parking spaces are brightly marked, with contrasting colours, big blue symbols of accessibility that indicate only people with a parking placard can park there, and both groupings of accessible parking are provided with a well marked, safe path in between the spaces, off the road, as well as a crosswalk from the parking spaces to the entrances.

Lowe's Exemplary Accessible Parking

At first I thought that Lowe’s, and other companies within Queensborough, had such amazing amounts of accessible parking spaces because they are American companies, who bring the laws of the Americans with Disabilities Act to their Canadian stores, but then I found out that Value Village is also an American store, which indicates that only some decide to value their customers in Canada, with the same values as they do in the United States, and Value Village is not such a store.

It is extremely disappointing when a company decides that they needn’t take into consideration the safety, accessibility, and needs of their customers with disabilities, simply because the law or building code has been satisfied, and they feel they needn’t do more. It is all the more disappointing when it is a brand new build, in which they had control over the design of the parking lot.

Citizens for Accessible Neighbourhoods will be contacting Value Village to express our shock and displeasure at their decision to ignore the parking needs of their customers with disabilities. If you would like to share your opinion with them as well, email them at customercare@savers.com