Who is…a Spoonie?

When I first heard anyone refer to themselves as a spoonie, I was, needless to say, confused. I thought of spoons as tools to use for eating a lot of our food, not for something we called ourselves.

I would learn later on that the people who called themselves spoonies were people whose experiences with chronic illness (whether physical or mental) could be described with this thing called spoon theory.

But what is spoon theory?

Spoon theory, a term first coined by Christine Miserandino when describing her experience with lupus, is a shorthand for describing how, because of someone’s illness or disability, they have a very limited amount of physical and/or mental energy to do tasks throughout the day (in other words, a very limited number “spoons”) before they are just unable to do any more tasks.[1] For example, let’s say that you have only twelve spoons for the day based on how you feel and how much energy you have, and driving to and from work is three spoons, cooking for the family is four spoons, and work itself is three spoons. That leaves you with only two spoons, and that’s before we’ve even gotten to hygiene, housecleaning, taking care of any pets, laundry, or any other of the basic day-to-day tasks that many of us may take for granted (before we even get to socializing with friends or anything like that).

This shorthand spoon theory is supposed to help people who don’t have that shared spoonie experience (like me) understand that people with many illnesses have limited energy to do the tasks they need to do, let alone the tasks they’d like to do. Through having that understanding of spoon theory and the experiences of spoonies, some of us, particularly those of us who (like me) don’t have that shared experience of living with a chronic illness or other disability, can become more understanding of our friends and family members who do have a variety of illnesses or disabilities. Learning about spoon theory has certainly helped me become more understanding of friends whose day-to-day experiences with various illnesses or disabilities could be described with spoon theory.

All that being said, I would be interested in hearing from any friends or other readers who have experiences with various chronic illnesses and disabilities. Do you, as well, find it helpful for able-bodied people to have an understanding of spoon theory, particularly as it relates to your illness? If you don’t find it helpful in your case, why not? I know that not all illnesses are the same, so I’m interested in hearing from people who have a variety of illnesses, whether it relates to physical health, mental health, or both.


[1] In this piece, Miserandino also explains how spoon theory works: https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

Shared Post: The Cost of Being Disabled

With the election process in 2020 ongoing, I wanted to share a post that fellow blogger Karly shared on the cost of being disabled. While people with muscular dystrophy (what Karly was diagnosed with at a young age) might experience different costs from someone with a different type of disability, one thing that is universal is that American health care often makes it miserably expensive to have a disability. Since Karly’s hope is “to highlight the importance of voting with disabled people and health care in mind,” I figured that sharing her post at a critical point in the election process is ideal.

You can find Karly’s post here.

You can find Karly’s blog here.

How Wintry Weather is Not Friendly to People Struggling Physically or Mentally

An image of snow.

For able-bodied people like me, commuting in the snow takes a little bit more twisting and turning than it does on the average day. It’s annoying, but doable, for me.

For people with certain health challenges, whether it be physical health or mental health, the barriers created by individuals’ and/or society’s handling of winter weather, as well as barriers caused by the bad weather itself, can be problematic. Here are a few such barriers:

We as individuals don’t clear away a path wide enough for wheelchair users to navigate our sidewalks. 

Many wheelchair users need a pathway that’s at least 32 inches, so a pathway shorter than that will most definitely not be friendly to people using wheelchairs. For this, the solution is simple—just clear a wide pathway on our sidewalks!

We as a society have no effective way of handling the crosswalks that get plowed in. 

After major snowstorms, many a crosswalk in New York City, my hometown, get plowed under inches or even feet of snow. This affects wheelchair users, the young, people with other mobility issues (regardless of whether they use a walker or wheelchair or not) and the elderly the most, keeping all of these groups from effectively moving around. I am personally not aware of effective yet reasonable alternatives to this problem, though if anyone has solutions you can let me know in the comments section down below!

Pathways between sidewalks and buses are nonexistent or not wide enough for wheelchair users to pass, or for people with other mobility issues to navigate.

This is something I only noticed during a blizzard in January 2018, but boy is it a problem! Many pathways between sidewalks and buses that should exist don’t exist, making access to the bus impossible unless you’re completely able-bodied as I am. If the entity/entities responsible can shovel a pathway between sidewalks and buses wide enough for wheelchair users and people with other mobility issues to pass, the problem can be fixed.

The bad weather has adverse affects on mental health. 

A string of bad weather days can affect people who deal with claustrophobia (fear of involving being confined to small spaces), and the weather can cause great deals of stress that can be harmful to mental health, to name two. Nobody per se is at fault for these issues, but nevertheless we should be aware that these issues exist.


So next time a snow or ice storm comes, some of us may rejoice while others may complain. But regardless of what our own reactions are, we must be sensitive to the challenges that people with disabilities face in the elements. To that end, feel free to comment below is there’s some issue (physically or mentally) caused by winter weather that I did not mention in this post.

Why Straw Bans Are About More Than Straws

When I originally published this post back in July of 2018, there was debate about efforts by some companies (Starbucks, McDonald’s) and cities (San Francisco, Seattle) to ban the usage of plastic straws within their entities. Then, more recently, I heard that the United Kingdom will ban straws, among other plastics, starting in April 2020. Many environmentalists think it’s important to make sure that we reduce plastic waste and therefore reduce our usage of plastic straws, while many disability activists argue that there are currently no feasible alternatives to a single-use plastic straw.[1]

Personally, I think a ban must wait until there are feasible alternatives for people of all levels of ability. But I think this discussion on straws needs to be about more than straws.

Namely, we need to discuss our society’s lack of willingness to listen to the physically disabled, and the proposed straw ban is just the latest example of this.

Consider this—in spite of the fact that many disability activists (including many who have the lived experience of being disabled) have been raising concerns about such bans, the entities that planned to ban plastic straws are still going ahead. If we, as a society, listened to the disabled, wouldn’t we at least hear their arguments? Wouldn’t we at least consider for a second why they are saying what they’re saying? These, of course, are rhetorical questions, because in spite of many activists saying that other alternatives to plastic straws do not work, entities are still going ahead with their plans to ban usage of the single-use plastic straw.

Sadly, this pattern of not listening to the disabled goes well beyond straws. Here are a few of the many examples of parts of our society not listening to the disabled:

  1. Airline seats continue to shrink. In spite of many activists saying that airline seats have shrunk to the point that the disabled cannot get out safely in the event of an emergency, there are still successful attempts to shrink airline seats even further yet.
  2. We continue to view people with disabilities as inspirations. There have been oh so many times when people with disabilities have told others—in writing, in-person, through YouTube and through many other means—to stop viewing them as inspirations for just doing tasks in daily life that the rest of us perform.[2] If our society listened to them, then we would stop viewing these individuals as inspirations. But alas, many of us don’t listen.
  3. There are attempts to dilute the Americans with Disabilities Act (ADA). Disability activists have, on many occasions, warned against any legislation that undermines the ADA, yet amazingly such legislation to weaken the ADA passed the House of Representatives earlier this year. If we listened to people with disabilities, such a bill would be in the garbage can, not passed in the House.

Not listening to people with disabilities is very much a pattern of our society. This pattern did not start with the straw issue, and I fear that it will not end with the straw issue. However, it is about time that we change and actually start listening to people with disabilities.

Please note that I will not publish a post on Tuesday, May 28, 2019.


[1] Paper straws apparently disintegrate with hot drinks while metal straws are both inflexible and a safety risk because of how they conduct heat and cold. This NPR piece covers the issues with metal and paper straws much more thoroughly than I do in my post: https://www.npr.org/sections/thesalt/2018/07/11/627773979/why-people-with-disabilities-want-bans-on-plastic-straws-to-be-more-flexible.

[2] If you would like a more detailed explanation of why it’s a problem to just view people with disabilities as inspirations, I highly recommend reading this article from Everyday Feminism: https://everydayfeminism.com/2015/04/stop-calling-disabled-people-inspirational/.

Eight drinking straws in rainbow colors
I can’t think of anything more appropriate for a post involving straws than a picture of straws. By Horia Varlan from Bucharest, Romania (Eight drinking straws in rainbow colors) [CC BY 2.0 (https://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons

Some Dos and Don’ts of Behavior Towards the Mobility-Limited

A little while ago, I made a Facebook “public service announcement” about how people should really try to help people who are by themselves in carrying a baby stroller up or down a set of stairs.

Admittedly, I was on one of my self-righteous streaks when I put such a post on Facebook. I wrote it after helping a mother carry a baby stroller (with a baby inside) up a set of subway stairs, even though many others came before I did and passed the mother by. So yeah…I was in a mood to show that the behaviors of those around me were just plain wrong.

Yes, I was pretty self-righteous.

Self-righteousness aside, this one incident made me start to think about not only the stroller issue, but also some other dos and don’ts of behavior (particularly behavior when you are out in public) toward the mobility-limited.

But what are some of those dos and don’ts? If you’re not sure, please keep reading, as I break down some dos and don’ts of behavior toward people with different types of mobility limitations.

Parents with Baby Strollers

If you don’t have any physical limitations, DON’T just stand idly by while watching a parent toil with a baby stroller with the baby inside. For those who haven’t carried one before, they are so heavy and bulky! When I’ve helped in the past, it was honestly a challenge even with two people working on it, so I could not possibly imagine it being a one-person job. So if you’re physically able to help, please offer to help (even if that means missing your train or bus).

So, DO offer to help if you see a parent (especially if without a second adult) with a baby stroller. The worst you’ll get is a polite “no,” and at best you might just make a person’s day by being the stranger who helps out.

Wheelchair Users

Please, for the love of everyone, DON’T DON’T DON’T push someone’s wheelchair without the wheelchair user asking for it. Especially through the blogging world, I’ve met oh so many people who are just pushed around on their wheelchairs without asking for help.

DO push or help someone in a wheelchair, though, if they ask for help. But the key is being asked to help, because otherwise your actions fall into the category of a “don’t.” Also, if you see someone struggling with a wheelchair, DO ask if they would like any help.

People with Canes and Walkers

If you see someone on mass transit with a cane or walker, it means that the person with the cane or walker needs it for some reason. Therefore, please please PLEASE DO offer to give up your seat to a person with a cane or walker. If you are able-bodied, that person will need the seat more than you do.

On the other hand, please DON’T take the action of refusing to give up your seat to a disabled person. Furthermore, DON’T spend 100% of your time in transit on your phone or asleep…because if you do so, then you will not pay attention and may end up blinding yourself to the fact that someone needs your seat much more than you do. (Trust me, I’ve been guilty of such an offense before…I felt very embarrassed when I found that there was a person with a cane in front of me who needed a seat more than I did.)

Conclusion

To some of us, the previous sections of this post only elaborate on obvious etiquette for being an able-bodied person who is a pedestrian or is taking mass transit. To others, though, maybe this post serves as a reality check that we are not really having the proper behavior when it comes to interacting with people of limited or no mobility. Regardless of whether this post listed obvious etiquette, served as a reality check, or was somewhere in between, please post in the comments section below if there are other dos and don’ts of behavior toward the mobility-limited that I should cover!