Chronic Illness Challenge: Day 3

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(Late again, ironically from chronic illness problems! Still here though!)

Day 3: How did you get a diagnosis?

Ooooh that is a difficult one. In large part because in many ways I don’t have one yet. Or at least, not a solid one.

See, I’ve been sick since around 2002 – 2003ish. And despite all attempts we do not have a real solid idea of why.

I started going through diagnostic testing around that time. I had an EMG to try to determine if there was something up with the nerve signals to my muscles. It was the single most painful thing I had ever experienced (and while I still get severe pain on occasion, I don’t think it’s quite topped that one even though they’ve gotten pretty damned close). My understanding is that it was inconclusive since I never heard of the results and neither had my parents, since I was a minor at the time. After they weren’t able to find anything and I wasn’t able to adequately communicate my issues since I thought they were normal and I was in a mental health crisis, there wasn’t much more they did. The rest of that period went toward my mental health.

Of course, because my pain and leg weakness was getting ignored, I struggled with trusting doctors in the future. I didn’t trust my primary care physician from high school because I thought she wasn’t listening to me. I saw an internist at one point but all he did was give me naproxen and focus on my acne (what?!). We also had substantial language barriers so that impaired trust. I had gone to the ER for severe chest pain at one point and they gave me a tentative diagnosis of fibromyalgia and a one-time prescription of a few pain medication pills. Turns out that would later bite me in the ass because when I moved and tried to get another doctor, the office for the one I was going to see kicked me out because I had a “history” of drug use. Because I went to the hospital. And they treated me.

There was one point where I got lucky. When I was a kid I was a bit of a contortionist. My joints were too loose and I took advantage of this fact. Later in grade school my ribs slipped out of place when reaching for a box of Popsicle sticks above my head. Folks didn’t believe me at first – I mean, I was a kid, kids don’t have back pain right? – but the doctor connected me with an osteopath and he fixed me up. I’ve been seeing a different osteopath since then for other various joint issues, including those ribs causing problems again. He was one of the first doctors to actually believe me, and as I got older and I understood my body more I would be able to tell him where exactly the issue was and he confirmed it.

With all of this combined I had a really hard time trusting people, but when I moved back to my current area I decided to give my old primary a chance again. This time we’re communicating on an equal level and the office is a lot better about the issues surrounding chronic pain. She gives me all of the referrals I need, all of the medications I need (including controlled ones, because she trusts my ability to moderate myself), and works with me about my financial issue and how that impairs my ability to see specialists.

It took me until 2011 to actually get a pain diagnosis, the fibromyalgia, from a rheumatologist in the area when I had access to insurance. And even that is not all-encompassing. It doesn’t address the biggest issue that I face in terms of chronic pain – the fact that my legs will give out on me and the pain will ramp up so much that I either want to cut them off or worse, I might even get suicidal. This in combination with the severe back pain that I have developed very, very recently makes the path to diagnosis that much longer for me. I’m not done yet and I’m not sure when I will be. That one is even more dramatic lately so I’ll talk about it in a later post.

Still, I’m a fighter and I always have been. I’ll get through this. After all, I’ve gotten this far right? I’ve been through hell and back and I am still alive, I’m still kicking and I’m still determined.

Spring (er, summer) Cleaning

Evening everyone! It’s your residential SN here.

Y’all probably noticed that my last post was a year ago. I put the blog on hiatus while several major life changes were going on. But now things are starting to slow down again (or at least, in comparison to before!) and I’m feeling more comfortable with opening the blog up again.

This has been a very difficult year for me as I started to navigate through the hoops of the medical and the education system. I’ve learned a lot more about myself and also about what I am capable of and what my dreams are. I’ve lost diagnoses and gained new ones. I’ve closed old chapters in my life and started moving forward for my sake instead of for the sake of others. I’ve finally started therapy and treatment, after spending years hunting for medical professionals (be it physical or mental health) that believed me. I’ve gone back to school and have good plans for my future.

But it also of course means that much has fallen to the sidelines while Very Important Life Things took over for a while. Since things are starting to slow down, I’m thinking about getting back into writing again outside of the classroom.

So as a way to help me get into the habit of writing consistently again, I’m going to go ahead and start working on the Chronic Illness Challenge again. It might not be daily at first since I’m still ridiculously busy but it’ll give me some motivation to give this blog the attention that it deserves. Since I already did the first two days, I’ll pick up on day 3 tomorrow.

Here’s to a good, long run!

Chronic Illness Challenge: Day 2

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Day 2: How have these illnesses affected your life?

writing this one by hand because i cannot verbally do words very effectively right now, so hopefully writing it will help me hash out thoughts enough to make sense in sentences.

each of my illnesses have affected my life in many different ways. there are a lot of things that i have difficulty with when i didn’t before, such as showering and sleeping.

i used to be able to eat almost anything i wanted (at least until my texture issues kicked in, but that’s unrelated) and not get ill. having to be more careful of what i eat has made me more conscious of the kinds of food and ingredients that i am putting into my body, and the impact that it could be having, whether for better or worse. it has also made me more appreciative of many different kinds of foods, especially those that i cannot eat very often like my beloved cheese. learning to cook in an easy but healthy manner has been an adventure, since cooking many meals by scratch is often rather difficult and energy consuming for me.

i’m a lot less active than i used to be. i used to be into sports, liking soccer and played soft ball. i liked riding bikes and swimming, and playing in the woods for hours on end. when my joints started becoming looser (at least it certainly felt like they were!), some of these things became too dangerous to be an option anymore, and i didn’t have the energy to wander around outside. i’m trying to maintain elements of exercise, but otherwise my life has become a lot more mellow. i’ve learned to enjoy taking it easy, and saving that energy for surviving and i’m okay with that.

in terms of actual functioning, it varies a lot. some days i look like the average person, though i’m still always making tiny modifications in everything i do in order to make things easier for myself. other times i may not be able to get out of bed at all, or the furthest i can seem to go is to my desk where my coping methods and medications are. most of the time it tends to be somewhere in-between. sometimes i’ll be okay for a few days. sometimes i’ll be okay for an hour or two, and then get an incredible spike that bogs me down for the rest of the day, many times longer. because it can be so unpredictable, it is very difficult to make plans and stick to them. i always have to have a backup plan. but at least i try to be prepared, instead of simply letting things happen like i did in my youth.

Chronic Illness Challenge: Day 1

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Day 1: Introduce yourself. What illnesses do you have? How long have you had them?

Hello, this is SN! I’m assuming that this questionnaire is asking about physical illness, and not necessarily various forms of mental disabilities based on how the questions are structured. My physical illnesses include fibromyalgia, joint hypermobility and irritable bowel syndrome. The joint hypermobility I have had since I was a kid, but the fibromyalgia and irritable bowel syndrome I didn’t start experiencing symptoms of until I was about 14 years old. At this point this would mean that I have dealt with these two conditions for just over 10 years.

30 Day Chronic Illness Challenge

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i’ve been having some serious difficulty coming up with things to post on here, so when i found this challenge on tumblr i figured it would be a good way to get back into the habit of writing.

starting tomorrow, i am going to (try to) make one post a day for the next 30 days, one for each question listed. i think this will help me hash out some of my thoughts about the various conditions i live with, as well. and i’m going to make each post using Dragon NaturallySpeaking, in attempts to get more used to the program before school starts for the semester since my poor hands are a complete mess.

on to the questions!

30 Day Chronic Illness Challenge

  • Day 1: Introduce yourself. What illnesses do you have? How long have you had them?
  • Day 2: How have these illnesses affected your life?
  • Day 3: How did you get a diagnosis?
  • Day 4: How have your friends and family reacted to it?
  • Day 5: How does being chronically ill make you feel?
  • Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?
  • Day 7: What was the biggest realization that you’ve had?
  • Day 8: Where do you see yourself in 5 years time?
  • Day 9: Have you tried any alternative therapies? If so, what? Did they work?
  • Day 10: What little things make your life easier?
  • Day 11: Why do you believe you have this illness? Bad luck, a higher power, or something else?
  • Day 12: Briefly explain to a healthy person what it’s like to live with this illness.
  • Day 13: Has your physical illness had any effect on your mental health? Explain.
  • Day 14: Give 5 things you are grateful for.
  • Day 15: What would you say to newly diagnosed people with this illness?
  • Day 16: What is your favorite inspirational quote?
  • Day 17: How would things be different if you weren’t ill?
  • Day 18: Do you think you have become a better person through being ill? Explain.
  • Day 19: How do you feel about the future?
  • Day 20: Have you met anyone with the same illness? Did it help?
  • Day 21: What networks or websites have you used for support or information about your illness?
  • Day 22: How do you feel you’ve been treated by the medical system? Explain.
  • Day 23: What do you say to yourself when you need a pep talk?
  • Day 24: How have you managed to juggle your social life through your illness?
  • Day 25: Name 5 activities that you have managed to pursue while being ill and 5 activities you have done that you wouldn’t have if you hadn’t become ill.
  • Day 26: What impact has this had on your friends, family, partner, parents, etc.?
  • Day 27: What’s the most helpful advice you have had?
  • Day 28: Name 5 things you have achieved despite your illness.
  • Day 29: What has helped you cope with the stress of this lifestyle?
  • Day 30: And finally, starting at your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that part of your body.

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there’s been some… confusion as of late about whether or not i’m available to work, according to my managers.

this supposed “confusion” has been there since i returned from my leave of absence after my most recent injury (which wasn’t even work related). that was march. since then, i have been routinely going weeks without work, which means weeks without pay. this used to happen a couple times before that point (but only after i needed accommodations for my disabilities… hm…), but never on a routine basis. the first few times i was told that some of the managers didn’t know if i was back from leave yet, so they emptied out any hours i had in my schedule. and the first few times, i believed them. i thought it was a bit silly, seeing as there had been paperwork on file that specified a return date and they could have easily checked, but i let it go and simply asked for hours when necessary. or rarely, i took the time to rest when pain was flaring especially badly. i had a form for intermittent leave, so i could call in on days where i couldn’t cope enough to work, but i tried my best to avoid using it unless i really, really had to.

i didn’t start getting really upset until last month, when i tried asking for hours again for the two weeks i wasn’t given work. unlike before, there was no getting a straight answer on what days i should come in and work anyway. and every time i asked to be scheduled for work, i was told that they would go fix it “right now”, or that they would talk to me about it in just a few minutes.

first time, nothing. ask again. “oh i’ll go fix it for you right now!” check schedule, nothing. ask again. “oh i’ll go fix it for you right now!”

check schedule again, nothing. this went on for over a week. it was never fixed.

and even though it’s known to be an issue, as i’ve been bringing it up constantly? i’m still not being scheduled consistently. when you’re poor and disabled, and the majority of your income is going toward medical expenses? that is a major, major problem.

they’re trying to tell me something, and it’s not that i’m a valued employee.

i used to say nice things about working for Wal-mart. that was before i became a liability on paper. that was before i needed to be paid a living wage, and when i could work without accommodations for numerous disabilities. once it became clear that i actually needed help, they stopped caring.

i’m looking for work elsewhere. but in the meanwhile, i’m recording this so that other disabled people can see the sort of things we have to deal with in this company just to get a paycheck and be able to live. and so i don’t forget and, stars forbid, go back.

if you’re a minority, don’t work for Wal-mart. they don’t care.

I’m baaaaaack!

So things have been an outright mess as of late. I’ve been running around endlessly trying to get so many different things done in my life that I’ve barely had a chance to breathe!

The interesting changes in my life:

  1. I started, and successfully completed, my first year of college! This was a big deal to me because it was a way to try to get my life back on track and in my control again. I wanted to take control of my financial situation and potential career, and while I’m taking things really slowly at first I have been able to successfully complete classes needed for certification and with decent grades. The goal is to find a path into the field of counseling psychology, where I can enjoy working with and helping people in a field that doesn’t aggravate my health physically.
  2. Despite health care barriers, I am on the path to managing my physical illnesses. It’s not much because I can’t see the specialists I need for medications specific to fibromyalgia, but I have a primary care physician that is willing to work with me on pain management and incorporating physical therapy. The state may deny that I’m disabled and need medical care, but that doesn’t mean I can’t still advocate for my own health.
  3. My Schizotypal Personality Disorder diagnosis was recanted and replaced with an adult diagnosis of autism. This is a huge relief, because adult diagnosis for the autistic spectrum is rather difficult and I’ve been through so many different diagnoses that my head was spinning. There were major elements of my experiences that didn’t fit with the diagnosis of Schizotypal, and it turns out that it was one given to me unethically (to the point where the psychiatrist could have their license removed…). My family and I agree that autism fits a lot better, so I can learn to stop being conflicted about the elements of my life that were being ignored or unaccounted for and can move forward with learning more about myself and my conditions.
  4. I’m pursuing the necessary research to become a service animal partner! With numerous additional diagnoses that highlight my difficulties functioning in society, I now feel I have justification to pursue the path I had been considering for a few years. Right now the biggest barriers would be funding (what with being poor and paying for all of my medical expenses out of pocket) and location. Also, the cat would have to come to terms with not being the only animal authority of the house. But there are situations where having a stable companion to not only be there for me but to help me with tasks would be immensely helpful for my overall well-being.

With all of that, I’m hoping to be able to write a bit more often over the summer as things slow down a bit and I can start putting things into comprehensive sentences again. But in the meantime, yay!

for the record, folks

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content warning: this post contains a metaphor involving spiders. This post is technically in response to an old issue, but its points still need to be expressed. So i’m posting it anyway.

it is possible to be disabled and ableist.

ableism is an aspect of systematic oppression. the thing about systems is that they are complex – they are like spider webs that stretch out for miles and all of the strings intersect with each other. a single movement on the web affects the entire thing. something gets caught in the web – a minority in this case – and as it struggles against the strings to get free, it can shake the careful balance of another into the sticky strings and get them caught as well. as it struggles, it can also alert the majority to the presence of those caught in the web, dragging their comrade down with them. maybe the first is aware of this, maybe they aren’t. but either way, by not having been careful and considerate they too can contribute to the downfall of another, even in their struggles against the same web.

systematic oppression is so prevalent that it seeps into every aspect of daily life. the majority, those in control of the system, in turn have control over dozens of things that we interact with throughout our lives: the media, education systems, our families and friends. perspectives that are prevalent in the societies we live in are taught to us continuously throughout our lives by our families, our communities, television and internet ads, even casual conversation spoken by strangers as we walk down the street. from a young age, prevalent perspectives start to become drilled into our minds, affecting how we think about ourselves and others. we are the products of our civilizations. and unless we find ways to contest them, many of these perspectives become harmful. oppression shapes us into weapons, and boy do we use them well.

This is why it’s important to always be aware of our privilege, even within our own communities. If we don’t, we can do or say things that negatively impact our peers. Unknowingly, we could be contributing to the same harm that is brought upon them from outside of the community, but from within our own safe spaces. These are the spaces where we’re supposed to feel like we can get away from that – they’re supposed to be safe for a reason. When people of our own community can’t acknowledge their internalized ableism, it shows others in our community that nothing is ever safe. How do you think it feels, to not be able to trust anyone? It’s hard enough not being able to trust people that aren’t part of the community, people that don’t get it… how are we supposed to feel when we can’t trust the people that are supposed to get it?

The reason i get on people’s cases so much about language and behavior is because communication is the focal point of society. Everything we do to interact with other people is a form of communication. It doesn’t just have to be words, either – body language is another means of trying to communicate, or get one’s point across to another. Imagery is a form of communication. art, music… whether it has words or not, it attempts to convey emotions or concepts to its viewers or listeners. Communication, paired with psychology, directly influence how we feel about ourselves and how we feel about others. It influences how we interact with others and our overall behaviors in response.

Systematic oppression is in itself a form of communication. It is communication that tells people of minorities the dangerous and harmful viewpoints that people of the majority have of us. It is what tells us, in an incredibly complex way like the threads of the spider web, that we are worthless, unloved, unwanted, dirty, broken. Slurs are an extension of this, because they mean all of these different kinds of words and concepts in a small little package aimed straight at your heart. They are designed to damage us. They are designed to be weapons. That is why they hurt so much, because they are the development of a system that wants us locked away, made prisoners of their demands or dead. They are some of the many tools created by this system to control us and our emotions, to put us in our place. They are code words for every nasty thought that bigots have of us. And because of how language is learned and grows in cultures, these slurs become so commonplace that they infest our safe spaces. Actively or not, the majority’s system of oppression is taking advantage of the way that language is learned and shared in cultures in order to distribute these weapons to more hands. To cause more damage. And it’s “easy” to hide it under the guise of the “evolution of language”…

but that doesn’t change the impact it has on people. It doesn’t change the harm it does to people’s minds and hearts. It is the origins that matter, not necessarily current usage, especially when current usage is defined by the majority – after all, they’re the ones in power and have access to these lovely things called dictionaries and these are supposed to be our rulebooks of language, people’s emotions and histories be damned. The origins tell us the context of how they became common, how they became instilled in the minds of our peers and our children. The context tells us the damage it does, and why it hurts so.

So the next time you think to yourself “it’s just a word, it means something different now” when someone tells you something is a slur, remember these words i have told you. Remember the spider’s web and how it impacts us all. And remember that history has power… and there are people that want you to forget that fact.

[Dear World] Walmart Worker Speaks about Disability, Strikes, Organizing in Rural Community

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Last week, Sharon of AfterGadget and Ability Maine asked to interview me after hearing of my current employment with Wal-mart, coinciding with the recent employee strikes rippling throughout the country. Delightfully, she has given me permission to cross-post the article here.

Please note that this post is very, very long. I am posting this under my Dear World series since, even though it’s not in the format of a letter like most of them are, it is still a form of speaking out directly to those who need to be held accountable – specifically, the Wal-mart corporation.

This post first appeared at Ability Maine. Crossposted here with permission.

A dark blue background with a yellow moon-face with its mouth open in a shocked-looking "O." In black it says, "This Black Friday," and in white it says, "Boycott Walmart"

Low wages, lack of health insurance, concern for elderly and injured coworkers paramount

By Sharon Wachsler

Static Nonsense* is a disabled blogger I’ve known for a year or two. We follow each other’s blogs and tweets. SN periodically tweets about problems at work, including disability-related issues, but it was not until I saw recent tweets like this one that I knew who SN’s employer was:

#letusorganize #ourwalmart RT @AfterGadget: RT@OccupyWallSt: Support the WalMart Black Friday Strike eepurl.com/rL9oP

With Walmart the biggest employer in the US (a staggering one percent of the US population works for Walmart) and with Black Friday as the biggest shopping day of the year, the upcoming Black Friday strike by Walmart employees around the country is a very big deal. [Update: Walmart has retaliated against strikers and is opening the store even earlier than usual – 8 PM Thanksgiving day.]

The issues at the heart of the strike – a living wage, safe working conditions, fair and respectful treatment, lack of affordable healthcare, consistent scheduling – are relevant to all. However, as I learned during this interview, disabled and elderly workers are particularly vulnerable to ill-treatment by the retail giant.

While the media focus on strikes and protests has not included Maine, there are 22 Walmarts in Maine, employing approximately 7500 Maine citizens. According to data collected by the Maine Department of Health and Human Services in 2005, Walmart has more employees on public assistance than any other Maine employer – even though it’s the state’s second-largest employer (the first is Hannaford). The study found that more than ten percent of the state’s Walmart employees rely on state assistance such as Medicaid, Food Stamps, and Temporary Assistance for Needy Families, making the workers’ issues directly relevant to the Pine Tree State.

Thus, I was very excited to have a long chat online last night with SN about what it’s like to be a disabled employee of Walmart in Maine, and what SN hopes the strikes might accomplish.

Question: You’ve indicated that it’s important to you to maintain anonymity in part because of personal matters. Do you also have concerns about being identified as speaking about what it’s like to work at Walmart?

There is that, too. Unlike a lot of other states, Maine has a fairly small population and it’s not the most diverse of places. As such, situations as specific as mine – my specific set of disabilities – are a lot easier to identify. With such a low population, when you’re a part of a minority of any sort it becomes really obvious. I don’t fear specific retaliation such as being fired or anything, but I err on the side of caution anyway because given the company, it does still technically pose a risk.

My current job is on a shaky foundation, so I have to be careful not to rock that too much.

No Response to [FMLA] Medical Leave Request

Q: Why does it feel shaky?

I’m sort of hanging between professional warnings. Because of how much my conditions vary, there are days that I miss from work. I don’t remember the specific number of sick days that we’re allowed; I think it’s either three or six through a rolling period of six months. [During] winter or if one of my ribs gets shifted out of place, I can use up a lot more than that.

I applied for an intermittent medical leave [under the federal Family and Medical Leave Act (FMLA)] over a year ago specifically to cover that issue. But I never heard word back from either our store’s human resources department or from the head office. According to my boss, he doesn’t see anything of the sort on my file.

I had a coaching about my attendance on my last yearly evaluation, because I would call in [sick] on days where I felt I wasn’t in a good enough shape to do a decent job at work, or it was unsafe for me to do so. I was under the impression that my FMLA would have covered it; I only just found out that so far, it hasn’t, because we don’t even know if it’s gone through or not.

SW:  “Coaching” is a Walmart euphemism for? . . .

A formal warning.

Q: You referred to having conditions that vary. . . .

My current diagnoses are fibromyalgia, body-wide juvenile onset polyarthritis, scoliosis, and schizotypal personality disorder. There are others that I deal with as well, but they’re not officially on record as a diagnosed condition, such as my joint hypermobility and my chemical sensitivities. The hypermobility is what causes my ribs to shift in and out of place periodically, which can leave me in quite a bit of pain for several days, especially since my job is manual labor.

The arthritis and fibromyalgia can flare with various environmental factors like the weather and rainy or snowy seasons. So yeah, they fluctuate a lot. Some things can be predicted, like if I pay attention to the weather, but other contributing factors, such as stress, can’t really be predicted as easily. Unless it’s the Christmas season and you work retail. That you can pretty much guarantee is stressful!

Q: You applied for intermittent leave under the FMLA to allow more sick days during a flare? And your employer never responded. Is that right?

Yes. This happened around the same time that I submitted my accommodation requests to the head office [for reasonable accommodations under the Americans with Disabilities Act]. I heard back about the accommodations, but never about the intermittent leave.

The specific accommodations I requested, during March 2011, was a lifting restriction of 10 pounds – to avoid making my ribs shift and causing injury, being exempt from register duty in order to avoid joint injuries, and not being scheduled for shifts longer than six hours.

Missing Stools, Removing Benches; the Stress of Phone Calls

Q: Were the accommodations granted?

I was transferred to a different job position, and I now have access to a stool during shifts where I can sit down and rest for up to 20 minutes per hour. The job requirements of the position I’m in now states I’m only expected to lift up to 10 pounds on a regular basis, and since I now work in what’s called a service area, I can no longer be requested to run register when the store is busy.

Service area means I work in a location where I am expected to be present at all times in order to assist customers that need the service of that area. So places like the jewelry counter, the deli and bakery, and Tire Lube Express. I work in the fitting room and answer the phone for the entire store.

Q: I’m interested that you are allowed a stool because I read a post about problems disabled Walmart employees face. It says, “All chairs and stools have been removed from all Wal-Mart sales floors to keep employees from sitting while in view of customers,” including in cases where injured or elderly employees have said they need to sit sometimes to be able to work their whole shift.

That standing on the sales floor policy is real. People can get in big trouble for sitting down if they don’t have ADA accommodations. It’s also why I’m only “allowed” [to sit] 20 minutes per hour.

Q: I’d guess that a lot of people don’t know that they can request a reasonable accommodation, such as a stool. Has that been your experience?

Yep, took me this long even though I’ve been a cane user since 2007. We do have some [associates] that use [accommodations] but not many. Though I have noticed that we don’t have enough stools to go around. Sometimes mine goes MIA. My store is pretty lenient on the [sitting issue], though that may change. Our new store manager wants to take the fitting room’s bench away because our elderly associates sit down on it. And three of us have stools! His line of thinking is so ridiculous.

Q: In other ways, does this new position you were transferred to work for you?

It’s easier on me physically at times, since I don’t have to lift boxes or heavier merchandise like strollers. Dealing with smaller items like bras and their straps can be hard for my hands though. And because I also sort items that have been returned, I’m also frequently exposed to clothing washed with fragranced laundry products.

The stress of the phone calls can be really terrible, though. Since I transferred to this position, there have been days where I didn’t go to work because I knew I couldn’t mentally handle it. We get some rather nasty calls, especially in high traffic seasons like Christmas. People get upset because they all want to reach the same department, on multiple lines, and [the people in each department] can only answer one [call] at a time.

I’m frequently the buffer zone for callers’ mistreatment since I’m the first person they speak to – or the only person, if the call isn’t being answered by a particular department and it loops back to me. And then there are instances where even management doesn’t want to answer a phone call – even when it’s part of their job – and I’m left trying to defuse the situation, with little training to do so.

Retail is rough. A lot of customers treat us like cattle. Much like management frequently does. It’s usually one or the other.

Older and Injured Workers Required to Unload Trucks

Q: How do you feel treated like cattle?

There are times where associates get pulled to do different jobs that they’re not even trained for. For example, when trucks of merchandise come in. On several occasions, management has pulled associates from my department to help unload the merchandise from the trucks. I’m exempt from it since I’m in a service area, but I’ve done it before when I was a cashier, and I’ve worked in warehouses before. It is not an easy thing to do, and it can be very intense on the body. Several of our associates are elderly, in their 50s or even 60s and higher. I remember one instance where a 60-something woman injured her shoulder pulling a truck. She developed bursitis from it. When a manager asked her to do it again, she pointed out that she couldn’t; she was dealing with a shoulder injury. They claimed that since it wasn’t officially on record as a limitation, it didn’t matter.

Warehouse workers have specific safety regulations, such as encouraging the use of back braces and proper lifting, much of which we do not have to do in our current positions, so we don’t have access to those braces and the like. I have a back brace, but it’s a personal, so I’m an exception.

Q: Would you like your fellow associates’ health and safety needs to be taken into consideration by your employer?

Oh gods yes. We have another associate with a knee injury. I heard at one point that they made her pull a truck too, even though she’s on accommodations like I am. I think the only reason why they haven’t been able to make me do it is because I’m in a service area. That is my one protection

Another example [of workplace safety problems] is when [I was working as] a cashier. After I got my ribs adjusted I had numbness and poor movement in the entire right half of my body and could barely use my arm or hand. They made me run register anyway, with one arm, because I didn’t have a note.

It frequently feels like our health is supposed to be our responsibility alone, and that their concerns about it are simply lip service. Our training includes how precious [our health] supposed to be – about proper handling of chemicals or spills that include things like bodily fluids – but anything past that training doesn’t seem to matter.

Desire for Communication and Follow-Through

Q: If there was support for you and your fellow associates, what would it look like? How would you like things to be?

Encouragement for intercommunication would be nice. We have an open door policy, but that only goes so far. I remember one time I tried to report an incident of associates making abuse jokes in the break room, and I asked for sensitivity training. I got in the door fine, but nothing happened after that point.

Managers should be more willing to work with individuals or groups to address their concerns and needs. It doesn’t help that some of our managers appear to have a high turnover rate, like my department. Since I started there, we have had three different assistant managers, two zone managers and at least two department managers. People aren’t really there long enough to establish a trusting relationship, which is what you really need when you’re dealing with a management system. And some that have been there for a while feel like they’ve become callous over the years, or just aloof.

I don’t know if the turnover rate is the same in other departments or not. I suspect that ours is because our department covers so many different sections under one heading – Mens, Boys, Girls, Infants, Ladies, Ladies Accessories, Shoes, and Jewelry. The others are much smaller. Ours appears to be very stressful and chaotic to maintain, and there’s a lot of drama between associates.

Q: So your experience is that the door is open, but then after you’ve gone through the door, what? Alice disappears down the rabbit hole?

Exactly. It varies so much between managers, though. My current boss isn’t too bad, though sometimes it’s hard to tell if what he says is company policy or not. With others, it’s like they’re sitting there, nodding and listening, but it’s just going in one ear and out the other. And frequently they contradict each other. One manager will say they’re allowed to do something, while another will say they’re not.

Like the manager that pulls our associates for trucks – our boss insists that [the other manager] is not allowed to take our associates like that, but she does it anyway. No one stops her. I tell the associates to hide when she goes calling for them, praying that she doesn’t come hunting us down. . . .

Encouraged to Quit Due to Disabilities

Q: How long have you worked at Walmart?

Several years, off and on. This is my third time working at this particular store. I started shortly after high school, before I went to college for the first time, so that was two or three months there. A second time before I moved to New York, after my warehouse job, I think that was another year. And this time I started in July 2010.

The first two times I worked [at Walmart], it wasn’t that bad. But that was before I [brought up] my disabilities with them because at the time, [my disabilities] weren’t causing me many issues, so I didn’t want to expose myself to trouble when I didn’t have to. Though that is when that one arm thing happened.

It was the third time, this current time around, that things started getting messy because of how much my illnesses have been affecting my life overall. That’s when I started speaking out more about it. That’s when mistreatment started to become more clear; I could see how it was happening to people around me just as it was happening to me.

Q: Let’s talk about some examples. You tweeted this on November 1:

…the lowest number of hours i can work per week is 16. my boss suggested that i “leave until [i] feel better.” #walmart #disability

What’s the story here? What did he mean? I’m particularly curious because you requested leave under FMLA and got no response.

He knows that the winter season makes my conditions flare more in comparison to other seasons. That’s one of the reasons why I was trying to get my hours reduced, especially since I’m attending school at the same time, which just makes things even harder and more stressful. So he said that I could leave to take a break until I felt healthy enough to work again. He also said that I’d be leaving on a good note, suggesting I’d be able to return without issue, but with the attendance issue that could change.

I’m just flabbergasted that his first response was telling me to quit. What kind of boss says that to someone that’s been dedicated about working?!

He also said that they would try to get me a copy of the writing that said that requirement, because I explicitly asked for it because no one else had ever mentioned it as a possibility before. Haven’t seen any such papers.

Q: The requirement/papers you’re referring to is the supposed requirement that you have to work 16 or more hours, even though you have a reasonable accommodation granted that you work 12 hours a week max?

Correct. Though the accommodations don’t include the 12 hour restriction. That came from an hourly availability request that doesn’t link to the ADA. I didn’t ask for the 12 hour a week restriction until much later, July of this year, due to a really bad Fibro flare. The request did come from my doctor.

And when I spoke to my immediate supervisor, our department manager, about my schedule not having any hours for the next two weeks and mentioned the 16 hours thing . . . he looked surprised as hell, as if he had never heard of such a limit.

Q: Oh yes. I saw your three tweets about the scheduling weirdness on November 12:

…ok. something’s wrong. two weeks in a row and i don’t have any hours scheduled for work. what the fuck is going on?

i expected the one week to be a fluke. but two? back to back?

if this is ‘punishment’ for asking for limited hours for the sake of my health and education, i’m going to be pissed right the hell off.

That was also the same day that I watched the system bring up that I had a weekly restriction of 12 hours – the same restriction I had been trying to get for months. It didn’t bring any protest about being under 16. Just that we were trying to schedule me for more than 12.

After speaking with my supervisor about the lack of hours, I don’t think it was [retaliation], no.

Q: So, your boss – the guy who suggested you quit – is that a different person than your immediate supervisor/department manager?

Correct. For some reason, we have an oddly high number of management positions. That’s also something that’s bothered me. There are so many different kinds of “managers” that one can go to, and sometimes it’s hard to tell who you’re supposed to be speaking to, or even what their position is. Some of the ones I can think of off the top of my head are Customer Service Managers, Department Managers, Assistant Managers, Zone Managers, Shift Managers, Co-Managers, and the Store Manager  It’s even more frustrating when one manager says that another manager can take care of something, but they can’t, or they say they can’t.

It’s especially confusing when a customer says they want to speak to management, and they don’t understand why you ask what they’re inquiring about so you can get the right manager.  Honestly, I agree with them, I don’t know why we have so many either! When people are like, “I just want a manager,” we can’t explain that we don’t have just managers.

Stymied in Efforts to Provide Quality Customer Care

Q: You’ve mentioned being “dedicated” to your job and wanting to do right by the customers. I get a feeling that you take pride in providing good customer service. Do you feel frustrated when you’re not able to do that?

Very much so. I enjoy being able to help people, even if it’s just helping them find something. If I can do something to make a person’s life easier for them, even just something small, that’s enough for me. It’s what drives me about a lot of things, including activism and even just being friends with people.

But when I have to constantly jump flaming hoops, or when it seems like those hoops are constantly moving when I’m trying to reach a goal, it frustrates both me and the person I’m trying to help. I can’t get them access to the things that they need on the other side, and it makes me feel sad inside, quite deeply.

I feel like I would enjoy my job a lot more if the system I was working in didn’t feel so stilted and broken.

Q: Is that one of the reasons you have returned to work for Walmart – to provide good customer services?

That’s part of why I’ve returned there, yeah. The other part is that around here, it seems like they’re the only place that will hire me. Be it due to the economy or disability [discrimination]. A lot of customers don’t seem to realize that there are some of us who legitimately want to help them. It’s hard to know what they think in terms of my specific situation, since my job is pretty much the pillar point of giving them access to one department or another, or management. I don’t know if they consider it to be a failing on my part (though sometimes that becomes pretty clear) or if they think the failure is on the side I’m trying to reach.

It’s easier for them to tell the struggles when they’re physically there with me, because they can see me trying to get a hold of the managers. When you’re on hold on the phone though, you can’t see that.

The fact that I work nights makes it even harder. There’s a lot less people working, then. So you can’t reach [managers] as easily.

As someone who works the phones, I will admit right off that I don’t even like calling our store. It’s terrible. Even when we really try, sometimes we have to redirect calls five times to get through, or customers will be waiting half an hour.

And part of it is because departments seem to be poorly managed and disconnected – even with the number of managers we have.

Q: You want to help people and make their experience pleasant and productive, and yet you know that they likely will not experience that.

Exactly. It’s terrible. There have been a few instances where it felt like I was really able to make a difference, but they’re few and far between.

There was this one customer I had, who was completely colorblind. He asked me which shirt out of two looked best on him and seemed to match his clothes, since he couldn’t differentiate between the two of them since they were the same style. After that, I helped him find a matching tie of a close enough shade. That was pretty hard; we didn’t have many anywhere close to that color, but we managed to pull it off. That made him really happy.

I’ve had other customers that have difficulties with wearing particular bras. One lady, I helped her find a bra that didn’t contain any metal and opened from the front instead of the back, because she was having an MRI and a chest operation done. She needed something that wouldn’t be very tight but still provide a decent level of support. Not something I could have easily done, seeing as I can’t even wear them! But we managed to find something in the sports bras that she was satisfied with. I’ve also helped customers come up with innovative costume ideas, when they can’t find something they want in the Halloween section or it’s out of season by putting things together from other departments.

Q: It sounds like some of your most satisfying work experiences have been connecting with customers with disabilities or health issues — people who don’t “fit the mold” — and with getting creative, in general.

Pretty much. I’m one of those customers myself, and very few people “get” that sort of situation. So it makes me feel better to let them know that hey, there are some of us that do get it . . . and we can help out in any way we can.

But yeah, disabilities are a major focal point of my life. Even the tiniest of things winds up revolving around them. They’re always a factor in daily life, so it just comes naturally. And it helps to show people that they’re not alone, especially in an area that is this rural.

A group of many people standing outside wearing bright yellow or lime green t-shirts, many holding signs. One of the prominent signs has a yellow frowny face in the middle and says, Walmart: Always Low Wages

Low Pay, Lack of Insurance, Rationing Medication

Q: A big issue for both people with disabilities and for Walmart workers is health care, which is also related to pay. These are central issues in the strikes. A couple of weeks ago, you tweeted this:

i found out that i am indeed eligible for medical care through my employer #walmart, with one problem…

it would take 3/4s of my annual salary just to pay the deductible. not kidding, that’s how little i earn. it’s a $3,000 deductible. #walmart

otherwise, my immediate supervisor and i cracked up constantly about the application, bc it fails to consider how sick ppl like me are.

the options for opting out ranged from being completely healthy & mentally secure, putting money elsewhere [vainly] and already having care

but not once for ‘i can’t afford this shit, i work for you! how would i be able to afford it?!’

one of those instances where even the health reform law doesn’t help me by forcing employers to provide healthcare. too sick, too poor.

maybe if the companies that people like me worked for weren’t such corporate leeches…

Q: Care to elaborate?

Yeah, the health care set up is atrocious. I’ve been “eligible” for it for the past two years – though the associate working in HR [continues to] insist otherwise, quite rudely. I applied for Mainecare under the premise of disability and was denied earlier this month. They claimed that I can still do “light work.” As if being able to work somehow means I don’t need health care, or that my health doesn’t directly impact my ability to work. On our way back to the HR room to deal with the open enrollment, my supervisor and I were commenting on how pointless it is, because most of us are already on Mainecare and that does a better job of covering things and you don’t have to pay for it. Even the healthy people prefer Mainecare over the Walmart insurance.

I don’t know what the system structure is like, though I’ve heard that the places that actually accept the insurance are slim and far between. I wager that most of my current doctors, who I wouldn’t give up – period – wouldn’t accept it even though they accept Mainecare.

But honestly, offering us health care with a deductible that costs nearly as much as our annual wages is ridiculous. If they’re going to offer us health care with that high of a deductible, they need to pay us more to accommodate for it. We barely make enough to eat and keep roofs over our heads, let alone be able to see a doctor.

I make $8.50 an hour. With my number of hours, I make maybe $600-700 a month. That’s enough to pay rent and maybe food, depending on the kind you buy, and never taking dietary needs for IBS [irritable bowel syndrome] or other conditions into consideration. There’s nothing left for medical care.

Q: So you are uninsured right now because you were denied Mainecare?

Correct. Right now I have to pay everything out of pocket. Only reason I’m managing currently is because I have pain meds stashed from a previous remaining refill, before I ran out. Otherwise I have to see my doctor to get a new one. The last time I refilled it, I had to use one of those federal savings programs. The only reason I knew of them is because my fiancé works in pharmacy and told me. It dropped my med price of over $200 to around $47 for that month.

Since then, I’m rationing them.

Q: Do you worry about what will happen if you get a really bad flare and run out? That always terrified me when I was getting too few and too ineffective pain meds. It felt like walking a tightrope.

Absolutely. It’s why I have money stashed in case of emergencies, because I know that it can always happen. I spent a large portion of my life while sick without adequate care or insurance, so I learned the hard way. I’m very lucky that I can live with my parents right now, so I don’t have to pay rent or utility bills, though lately I do have to worry about food.

The refill that I have was for a rather large number of pain meds, 120 of them, and I don’t always need to take them on a daily basis. They’re from my really bad flare in July. So that helps, it’s better than when I had to ration 15 throughout an entire year.

But right now my ribs are out again, and I will likely have to pay out of pocket for [treatment]. It’s affecting my work and means I have to take more meds. I’m not looking forward to winter. And without access to my doctors unless I pay out of pocket, I cannot apply for medical leave until I recover. So like my boss said, if it gets bad and I’m uninsured, I really would have to quit.

Isolation, Rural Location Make Organizing Difficult

Q: Are you involved in the strikes or protests?

I haven’t been able to participate much in things like the strikes or protests, but I’ve still been trying to boost the signals of the cries of others. As far as I am aware, there is nothing organizing in my area. When I searched on the organization websites for any strikes or protests in the area near me, nothing came up. No one seems to talk about it at work at all, either. At least, not that I’ve heard.

Our area is fairly rural in comparison to the larger cities. Not only that, but our largest city is over an hour’s drive away. I commute to work about half an hour as it is.

Q: You mentioned in an email to me feeling isolated by being rural.

Very much so. There’s very little up here in terms of support for just about anything. Just finding out about the fibromyalgia support group that was in the neighboring towns was a big deal. I expected to have to drive hours [to find] one, or be [unable to find one] in general.

So that’s the sort of thing that makes organization really hard for something like the Walmart strikes, especially if you deal with other boundaries due to being disabled. There’s a lot of folks that can’t go much of anywhere because the transportation they have access to will only take them out twice a week [which just covers] grocery shopping. I’m lucky in that I have a car. A lot of people don’t, and if I didn’t, I’d be in poor shape too because the city bus system doesn’t reach out this far.

Q: Let’s talk about the planned strikes and walkouts going on now and later this week. A lot of the issues you’ve brought up are part of the demands made by associates at the OUR Walmart page – wanting respectful treatment from manager, affordable health insurance, living wages, and supporting associates in providing the customer service that Walmart is supposed to be founded upon. What you think of the Declaration for Respect created and circulated by Walmart workers? Did you sign it?

I definitely signed, and I encourage other people to sign. I’ve pushed it on Twitter and among those close to me that know of my struggles with the company, like my fiancé. I would participate in a strike if there were one around here and if it wasn’t such a small area [where] people are more easily identifiable. If someone had started something to talk about it when I was looking for such groups, I probably would have contributed. But I didn’t find anything for Maine. Around here, when it comes to news issues, it frequently feels like things that happen “out there” instead of here. Like such things don’t happen in this state.

But I also support people that can’t strike because they worry about the stability of their jobs, which would be just as much of a concern for me, or stability with their coworkers that may not agree. The latter is especially true around here, when it seems like no one talks about it or when you do bring up the strikes at work, people don’t seem to care. I had to sign [the declaration] anonymously because of how specific my [disability] situation is.

As a passing comment, [I’ve asked] people what they think of it – usually the coworkers in my department that I have a good relationship with, not [relationships] that [are] easily shaken. [I asked] one person, and she seemed rather indifferent to the whole thing. Bringing such things up at work can be really risky. With so many managers, and ones that are continuously walking through the store to keep tabs on things, you have to be careful of what you are talking about, with whom and why. But it also sort of reflects the lack of push-back against our management in general. People will have individual issues with [management], but they won’t organize to talk about it. At least, not here.

Q: It sounds like you think your fellow associates don’t see their individual problems with management as being part of a larger? 

Pretty much. Like, a few years ago even I wouldn’t have realized that my issues were part of the overall problem.

Q: How did that change?

Social push-back throughout the country. Hearing about the strikes tipped me off, just as hearing about how frequently such organizations seem to take advantage of or somehow wrong folks with disabilities did. Making myself more aware of social issues.

A poster showing a black sky with a light beaming 99% into the sky like the Batman signal over a Walmart in an empty parking lot. In big white letters it says, Black Friday Boycott Walmart. Support workers striking for fair wages and fair treatment! forrespect.org. Want to do more? wepay.com/donations/walmart-strikers-food-fund

“Listen to Us, Provide Moral Support”

Q: Final question: What three things would you like everyone who reads this article to do to support Walmart workers like you?

Signing the petition is a big step, since it’ll show that we’re not just people whining about things, that others support us and understand that our needs are legit and a part of basic human rights.

If someone you know works for Walmart and they talk or complain about something that happened that reflects on such issues, or mistreatment toward them, listen to them. Let them know that you’re listening, and provide them moral support.

If you can, spread the word – don’t let this fall into isolation, because if it does, change will never happen. Companies like this are stubborn and need to be really shaken for them to get the picture. They need to be held accountable, and the only way we can do that is by making the most noise we possibly can.

Q: Those are three very clear, very easy, doable requests**. I noticed you didn’t mention the strike and boycott? Do you think there’s any chance of that happening in your area?

I’d love it if they boycotted, and I would [boycott, too] if it weren’t for the fact that it’s one of the cheapest stores around here and they only pay me enough to buy their products! The chances of [a boycott] happening though are pretty slim. I certainly get enough calls about when Black Friday or the deals start to suggest that [people are not going to boycott].

Q: Well, here’s to hoping!

Definitely!

Q: Thank you so much for your time! This was fun, and I learned a lot.

You too. Thank you very much for giving me the chance to speak out about this.

*Static Nonsense is an avatar – the name that the person I interviewed uses online.

**Additional ways to support Walmart workers are to boycott the store during the strikes and protests, making donations to feed the workers who are striking this week, or any of these very simple actions: sign a solidarity statement with Walmart workers, sign a petition asking Walmart to allow workers to spend Thanksgiving with their families, and sign a pledge to boycott on Thanksgiving and Black Friday.

Whispers

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I am a rape survivor.
I am the audience to your coldness, your assaults on our bodies, minds and hearts.

I am an abuse survivor.
I am the audience to your treachery, your invasions of our safe spaces, our wellbeing and homes.

I am ‘female’,
The target behind your snipes and your condemnation, the hearts ripping open as we become public sexual vessels.

I am your porcelain dolls, your paper lamps and your fortune telling cards,
The faces of cultures erased and long forgotten, crystallized in caricatures and fading shadows.

I am the talkative one, the silent one, the jokester, the seriousness
The person passing you down the street,
Living in fear of your shadows, your specters, whatever may come at any moment.

I am human.

We are human.
Behind this screen, behind these words.

So then,

what are you?