An Extra Piece of Luggage- Travelling With My Disabilitym

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Checking for the fifth time that my passport hasn’t left my possession, clenching the arm rests as I imagine the plane rattling to the ground, or writing a well researched itinerary planning every minute of my trip. Those examples are not how my travel anxiety manifests itself. Instead, I worry about the extra piece of luggage I am carrying along. I worry about travelling with my disability.  

                  As a child, I was fortunate to travel regularly with my family; sometimes it felt like we had a vacation at least twice a year. We would travel across the UK and South America, and have taken trips through the US, and in Canada. I was desensitized to flying and never experienced any stress outside of the occasional late flight, or the insistent wailing of an infant on the plane. When I lost the mobility of my right arm, this familiarity with travelling altered. I became anxious in the airport, nervous about the strangers that crowded the terminals. I worried about the security staff misunderstanding my limitations and causing me pain when they rubbed their gloved hands on my shoulder searching for contraband. I thought about the confined seats on the plane. Would my neighbor claim both arm rests causing me to tense my muscles the whole flight to avoid a collision with their arm? Or if I would have an aisle seat, needing to dodge the unbuckled passengers stumbling to the washroom, or a stewardess pushing her cart? I didn’t have a guide on how to travel with my disability, and if I typed this topic into the Google Search Bar, I wouldn’t find articles that suggested any advice to mitigate or control my type of travel anxiety. I want to fill that gap in the literature with my experiences. I didn’t stop travelling once I had learnt that it might become more difficult because of my disability, and I experienced many embarrassing or frustrating experiences with each flight, but I used them as lessons for how I could travel more comfortably with my wonky arm. My advice is biased; it is completely founded on my limitations, and my experiences while flying. However, I am not the only person who has acquired a disability and needs to re-learn how to travel with their new restrictions, and I hope that my experiences can provide some insight.

                  To change a behavior, you need to understand what motivates it. To reduce my stress while traveling, I had to recognize the source of my travel anxiety, and why I focused on worrying about a visit to the airport or the hours on the plane, rather than fantasizing about my trip. The root of my travel anxiety is the invisibility of my physical disability. You can’t see my scars or my deformed shoulder if I am wearing a sweater or t-shirt. I have to describe to people why my right arm can’t raise to meet their own, or why I have difficulty carrying things with what used to be my dominant arm. I often have to ask for help with my limitations, and I feel compelled to pair the request with an explanation for why I need help. It became another piece of luggage that I need to pack: A bag full of practiced sentences, concise explanations, and believable justifications concerning my disability and what I need to be comfortable. I get anxious because people can’t see my disability, and rightfully, they can’t help me without knowing my limitations. While travelling, aside from my close companions, everyone I encounter has this type of blindness to my disability, and I fear without an explanation that they’ll frown as they assist me, suspicious of the reasons behind my requests. But it is silly to think that I could walk around the airport telling my cancer story to everyone I pass, and the only solution was to change this perspective. Comprehending the source of the anxiety you experience while travelling with a disability will help you understand how you can control it. By acknowledging that communicating about my disability at the airport and on the plane caused my travel anxiety, I could focus on the areas of travelling that triggered it:

  1. Trouble, or anxiousness when speaking with airport staff about my disability and asserting what I require to be accommodated while in the airport and during my flight (during check-in, at security, and while boarding the plane).
  2. The strain that my luggage and carry-on bag may cause to my left arm from bearing the weight, and the potential embarrassment when asking for help. 
  3. Avoiding physical contact with strangers while moving through the airport and while on the plane. 
  4. Pain, discomfort or any irritation to my arm during the flight. 

Once I pinpointed those areas, I could prepare for a trip and with the intention to fly more comfortably with my wonky arm, but before tightly rolling up my clothing and placing it into my suitcase, I researched what accommodations the airport or airline could provide to ease my experience. Unfortunately, it was easier to gain this knowledge through interactions rather than “Googling” the topic. Either way, both methods of research allowed me to understand when and from whom I could ask for assistance at the airport.  I find it helpful to arrive early at my terminal to check-in for my flight so I can ask the clerk at the airline desk for a seat with my right arm against the wall of the plane to avoid contact and pain. If necessary, you can ask for a porter that will commute you and your bags to the terminal and assist you while boarding. The airline check-in desk is useful to acquire information on how you can be assisted while travelling, and to ask for accommodation with your seating. I’ve also learnt that the “priority” lines at the airport would be another mode of accommodation for me. These lines are located at a few key check-in points at the airport, and when I have asserted that I require extra time or accommodation, the staff direct me forward and have been more than helpful. It is important to understand how the airport or the airline you’re travelling with can assist you so the burden doesn’t fall entirely on you.

Although my understanding of how the airport could accommodate me alleviated some of my stress, I still struggled with communicating these needs. I didn’t have a sign on my forehead that told people to avoid my right arm. I was still self-conscious while asking for help or priority boarding, and my research didn’t dismiss the root of my travel anxiety. My solution to this barrier was to travel with my arm in my running sling. I normally wear this sling when I am exercising and need to support my right limb, or when I am in pain during the day and need to alleviate the strain gravity places on my arm. The aid makes traveling more comfortable, but it also acts as a stronger communication device than my words. I don’t feel the need to lug along an extra suitcase full of explanations, and it has helped me gain more confidence when asking for assistance. However, if you do not have an aid for your disability like a scooter, a cane, or a brace, you should fight against any anxiety you experience while explaining your needs, and be confident asserting your limitations. The task is much easier to type about than to act upon, but if you can find a device that makes you more comfortable asking others for help, you can use this as support until you are confident to express those needs independently. My sling was the foundation for building my confidence to assert what I need, and allows me to clearly communicate my limitations to others at the airport. I found that packing this item also acted as a warning signal to the strangers rushing through the terminals and boarding the plane; those who had always stood too close to me, nudging by or bumping their luggage into my arm. My sling reduced the source of my travel anxiety by calling attention to my limitations, and targeted two areas of travelling that triggered my stress: communicating about my disability, and avoiding a collision with stranger’s at the airport. 

Wonder Care- Elastic Shoulder Immobilizer Support Brace/Sling https://www.amazon.ca/gp/product/B00UFCLAAM/ref=ppx_yo_dt_b_asin_title_o01__o00_s00?ie=UTF8&th=1

                  I have specific limitations when travelling with my disability that might not be comparable to someone else’s, but for most people with a physical disability, the style of suitcase or bags they travel with could be a barrier to their experience. It is rare to feel independent when you constantly have to ask for help, and dependence is emphasized at the airport. I travelled frequently when I was planning large trade shows for a defense company, and I would cringe with embarrassment as my boss would tote my feminine carry-on, or lug my purple suitcase off the bag carousel when he noticed I was having difficulty. If possible, I want to bear my own baggage. I have learnt to pack lightly into a suitcase that is small enough to be a carry-on and light enough for me to haul around. Although checking this bag doesn’t reduce any anxiety I have about losing my luggage, it does leave the majority of the carrying to someone else. The suitcase I am describing also has four multi-directional rolling wheels that let me tug it along in any orientation that is most comfortable for my left arm. I can push it on four wheels in front of me, pull it on two wheels behind me, or roll it easily by my side. For the items I want on the plane, I pack a shoulder bag because my dominant arm can easily carry it. If you’re travelling with a physical disability, you should be aware of what type of luggage can ease the strain on your limitations. If you will require help, I suggest travelling with luggage that your companions can easily carry for you, or at the very least, bags that wont embarrass them. I pack my luggage with the knowledge that they will be hard to carry and that I might not be able to rely on someone else’s assistance. That awareness requires me to be conscious of the type of bags I can comfortably travel with. 

                  The contents of your bags are as important as the style of bags you bring when trying to travel comfortably. Travelling with my disability requires me to mitigate my chronic pain more than typical. It can feel like you lose a day waiting in the airport. You wait in a line to receive your boarding pass, you wait to have your possessions searched, and you wait in a line to wait on the plane. Being sedentary for long periods of time acts like fuel to my chronic pain, and it’s almost unavoidable while stuck at the airport, or restrained to an uncomfortable seat during a long flight. My sling reduced some of the pain I endured while travelling, but it wasn’t enough. It is obvious advice to bring along painkillers (which are vital to pack when carrying along chronic pain), but to mitigate my discomfort while travelling I had learnt to carry more. I would become bored while waiting, and my discomfort would come into focus, so packing items to distract me was important: a novel or word puzzle book, a tablet or I Pad with TV shows and movies downloaded onto it, or a play-list you can lose your mind in. Those items stowed in my carry-on helped me ignore some of the pain I felt while travelling, but I learnt that it was also important to additionally pack items that would bring me a type of comfort that a film couldn’t. I have made it best practice to pack my navy blue eye mask and plush travel neck-pillow when I fly to help me slip easily into sleep; when you’re sleeping, you can ignore your pain. My neck pillow is useful for dozing off, but also for supporting my neck and back when I start to feel uncomfortable. Recently, I brought along a single person blanket that was thin enough to roll up into my shoulder bag since I shiver easily, and the movement irritates my surgery site. Just as critical as knowing what the airport can provide to help you travel more comfortably is knowing what you can bring to travel more comfortably. 

                  I have not travelled independently since my surgery and I have not learnt what to pack in preparation for a solo trip. I have not found a carry-on bag or purse that eases the strain on my left arm and makes my possessions feel weightless. I also haven’t designed the perfect description of my disability or my needs while hastily interacting with a stranger at the airport. I hope to have advice for those experiences eventually, but the anxiety I felt when travelling with my disability was significantly reduced by the items I had learnt to pack. I have found a stronger way to communicate my needs, I understand how the airport can accommodate me, and I have learnt the type of bag and the items to pack that will make the trip easier. I have discovered ways to travel more comfortably with my wonky arm. 

Share Your Opinions

What do you pack to travel comfortably with your disability? 

What situations at the airport or on the flight have helped you understand how to successfully approach negative interactions, or a lack of understanding about your disability? 

What would you add to my packing list, or what advice can you contribute for those who stress about travelling with their disability? 

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An Acquired Taste

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I shivered violently as surgeons seemed to move manically around the icy operating table. Someone placed a blood pressure cuff on my bicept, while another person worked on puncturing my vein to insert the IV tube. 

Patient number #181141 Emily Marshall, born April 29th, 1993, and we are going to be removing…” 

This is the last memory I have of my functioning arm. 

When the surgeons removed the sarcoma, they removed the ability of my right shoulder joint. They replaced my humerus with a titanium pole and used bone cement to secure the prosthesis to my shoulder socket. This approach removed the cancer, but it also removed the chance for me to hold more than ten pounds in my right arm, to lift a baby high above my head, or to reach out with both of my arms breaking a fall. It removed my status in society as an abled bodied person. I started to understand that there were many activities I would have difficulty performing independently—Ladies, I challenge you to try to put your tampon in using only your left hand. That challenge may seem ridiculous, but it was certainly a learning curve I faced four years ago. I can do this task now without calling for assistance, but I will always be limited. 

No one spoke to me about grief after my surgery. Why would they? There was not a dead body to bury. However, I was experiencing a type of loss and I believe a conversation about grief would have allowed me to understand that acquiring a disability is an acquired taste. You will go through stages, similar to those defining the process of grief, until you learn to adapt and accept your disability. 

Initially, I was in denial that I had a disability. Although I recognized my limitations, for nearly two years I denied that I was disabled. This was not an identity I had known for the first twenty years of my existence. The stage of denial blunted my confidence to advocate for accommodation in various aspects of my life. By not accepting that I had a disability, I neglected to learn about the resources designed for people with disabilities, or to advocate for accommodation in my career and daily life. I was constantly reminded that I didn’t “look” like I had a disability, and so I felt like I would be taking advantage of the system if used the resources designed to make my life easier. The denial I experienced gave me the perception that I did not deserve assistance and that I was being a purposeful burden upon society if I chose to believe that I needed help.

My husband can tell you that anger was an emotion I often experienced when my right arm would “fail” me as I viewed it. My frustration would boil like the pots on the stove when dinner would overcook since I was slower in the kitchen with one arm. I would get irrationally angry when I was getting ready for a night of axe throwing or bowling with our friends. I stopped going to bars because I was annoyed that people had no concept of personal space, and I couldn’t dance with my friends without having my arm banged leaving with a throbbing limb. I blamed everyone else before I blamed myself for not telling people what I needed to be comfortable and accommodated. 

Although I didn’t bargain with some spirit to gain the ability of my arm back, I did bargain with myself about whether I had a disability or not. I would tell myself that I didn’t need help as I struggled to carry a few heavy bags, and then would get angry that no one stepped in to assist me. I went back and forth from labeling myself as having or not having a disability like it was an outfit I could choose. I would bargain with my right arm to understand how much it could handle. I negotiated with my body, fighting with its ability because I didn’t want to accept that I was limited. I have caused myself pain after trying too hard to prove that my arm was functional.  

Someone once told me that unresolved emotions may lead to depression. I can describe the next stage in the grief I experienced by this definition of depression: I had long-term unresolved emotions. For years I could not deal with my emotions properly and this caused me to behave irrationally. A storm terrorized my life when anger struck like lightening, and sadness poured like tears while hatred boomed as loud as thunder. I was not depressed, but I had a maelstrom of emotions I couldn’t control. 

In the years after my surgeon calling out my patient number, I have learnt to accept my disability. I understand my limitations and know when to ask for help. Acceptance is not perfection. I still get pissed off and annoyed when I struggle. I get angry when my left arm reminds me that it has only been in control for four years, but I know that I can ask for help. When I accepted my disability, I could accept that I needed to adapt and be proud of how I progress rather than focus on my limitations. With my left arm I have been able to throw darts, roll a bowling ball, and shoot a BB gun (while propped up on my foot) with accuracy. I have advocated to my employers when accommodation is required to succeed in my position and ask my colleagues for an extra hand more frequently. I don’t feel guilty when I deny a social request because I am too sore or fatigued. I have accepted my limitations, but I am still learning how to live with them. 

If someone had spoken to me about the grief I would feel in loosing the ability of my arm, I might have been able to shed some years off of the process. I wish I had been told that acquiring a disability is an acquired taste. There was no post surgery class about the fundamentals about coping with your disability. I was left to teach those fundamentals to myself. There is the potential that a discussion on this topic would have helped me understand sooner that although I felt like I had lost part of my body, I would gain trust in the rest of my body. I would learn to trust my left arm to become dominant. It began to feel natural when I stumbled to the ground relying on my body to react fast enough for it to fall on my left side, protecting my disabled arm. I had to learn to trust my body to adapt, but I had to discover this trust without any advice to guide me in my process of grief and gain.

I am just part of a small population of people who do not grow up with a disability but have acquired a disability. Whether the acquired disability is physical or mental, be the secondary result of a surgery or disease or be the part of natural ageing, there is always an aspect of loss. We endure those stages of grief in a number of ways as we start to understand the pieces of ourselves that we have lost, but why are we not forewarned? Hopefully, as more of us feel comfortable to discuss our journey of acquiring a disability, there can be more recognition and discussion of the topic of grief in relation to it. 

Emily Lane 


The “Right” Hand

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When I reach out my left hand first, I take the control back and decide if my disability should be discussed.

Like the majority of people my right arm was my dominant limb. I would write, brush my teeth, reach for towels on the top shelf, or chop onions with this arm. It was strong limb confident in its movements and quick with its reflexes. After the sarcoma was removed from my humerus, my dominant limb became my dependent limb.

As Darwin’s theory suggests, we adapt. I have learnt to do many things with my left arm and categorize myself as ambidextrous. But in a world dominated by right hands, I struggle when that hand is shoved out for shaking. I’ve become fearful of the right hand.

Can you picture me cowering in a corner, quivering in terror as someone’s right arm slowly lifts up, hand extended to receive mine? That’s an accurate representation of how I used to feel in that moment, although it is not an accurate depiction of how the situation plays out. 

In the first year after acquiring a disability I came in contact with this difficulty most often while interviewing for jobs. My initial response would be to apologize for my disability. I would use my left arm to support my right arm when lifting it high enough to greet my opponent’s hand. As a reflex to their confused face I would say: “I’m sorry, I have a wonky arm.” I would expect people to understand what “wonky” meant, but the “what?” question always preceded my practiced statement. Occasionally, after this initial interaction the interviewer would ask more questions about my disability than about my qualifications for the job. It is very difficult to condense a year’s worth of information into an explanation of why I’m not physically able to perform a handshake but am more than capable of exceeding expectations in the job of subject. I’ve learnt that when the interview becomes about my limitations, I will not receive the job. It’s a clear example of how someone’s disability can influence the opinion on whether that individual can fulfil the job requirements. If the conversation subject is referent of what you cannot do, how do you advocate for what you can do? 

After accepting a position, my handshake fear became prominent when I would introduce myself to new clients, when thanking people, or after the conclusion of a pointless meeting. By this time in my career of shaking hands I had understood that an apology or an explanation was not a right that I owed to the individual accepting my hand. I would greet their right hand with my left, but this action seemed to imitate a princess providing their ring for a peasant to kiss. It just didn’t seem like a natural action and it still provoked the reflexive phrase: “I’m sorry, I have a wonky arm”. 

Why do we grip hands while others kiss cheeks? Why is it an important part of western culture? I read about the origin of the handshake (link at the end of this post[1]) to discover that it has adapted over time. The first known example of the handshake is traced back to Greece in the 5thcentury B.C. The forehand was gripped rather than the hand, and the shake’s purpose was to remove the risk of your opponent having a weapon. Now the shake has evolved to be a professional courtesy. 

Not everybody I encounter needs to know about my health history or about my disability, especially during a handshake when I am meeting them for the first time. They do not have the right to know my story if I do not want them to. At least I am able to control that element of this social interaction. But how can I control that element? How do I avoid people asking me about my disability and essentially, my health history? 

My advice for any left hand bandit is to anticipate the handshake and have your left hand extended first. Your opponent must lift their left hand and may have a moment where they feel like that action is unnatural. This hands the control back over to you. Let’s not forget that there still is a population of left-handed people. This approach has removed the need for me to explain my health history and avoids the pattern of the conversation revolving around my disability. 

I do not deserve to be perceived as disabled, just like many persons with disabilities do not deserve to be defined by their limitations. When I reach out my left hand first, I take the control back and decide if my disability should be discussed. Regardless of right or left, a handshake is a sign of respect and should have nothing to do with individual’s physical limitations.

In conclusion, I believe we should be greeting each other with a quick kiss on the cheek, or a high five. 


[1]https://deepenglish.com/2014/07/handshake-history-listening-fluency-116/

Disability is Not a Decision: A Critique of the Trans-abled Movement

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Disclaimer: I’ll start by clarifying that in no way do I want to come across as ignorant to and not supportive of diversity. This is simply not true of myself. However, I will advise that my opinion of this topic will be bias. I also do not expect for my opinion to be seen as “the law”.  I have a disability, and I cannot understand why someone would covet one. That being stated, I am allowed to have an opinion, and since I use this blog as an outlet to discuss my disability, I see it as an appropriate platform to discuss this topic.

I didn’t get to choose my wonky arm, but I know if that choice had been given to me that I wouldn’t even humour the idea of choosing to be disabled. There are some individuals that do choose to become disabled, and I can’t help but have an opinion on it.

In 2015 when I started this blog, I stumbled upon a National Post Article (link at the bottom of this post) that induced a hot wave of frustration throughout my body. While I am very tempted to exaggerate, claiming that I spat my drink out in disgust or fainted from shock, really, I was just pissed off.

Trans-abled is a term to identify people who do not feel right in their fully functioning bodies. This can mean that they feel that they are truly blind, deaf, physically disabled, etc. regardless of a medical opinion and may take measures to fulfil this identity desire. A comparison to trans-gendered individuals has been made; another group of individuals who struggle with feeling alien in their own bodies, as they identify diversely than their assigned sex. Both groups wish to be accepted, and treated as the self they identify with, whether this be categorized by gender, or disability.  I have difficulties with this comparison because I can understand the sex vs. gender argument, and the increasing acceptance and acknowledgment of transgender rights has always made me proud of the progression of our society. But if ask me to understand trans-abled individuals, and I’m not sure I can be quite as open minded.

There are many negative opinions that float to the surface of  my pot as I stew about this topic. I can’t help but think that extremely selfish, attention seeking individuals would devote themselves to this cause. Only a lazy, selfish person would want to become dependent in some ways, and limited in life right? I can’t help but assume that this may be a very real issue for some, but is it just a money scam for others? Is this just a way to roll in government assistance checks? However, all of my negative opinions are rooted in one very true fact about this topic: they have the choice to become disabled, and many others do not.

I read a little of the discourse surrounding trans-abled individuals, but I know well enough that repeated exposure to a negative stimulus typically increases those negative feelings. If I started to resent my partner for their opinion on politics, the more we continued to argue about it, the more their opinion would anger me, maybe to the point of hatred. It only made me more upset to read about this topic event though my intent was to examine it. I noticed that much of the discourse neglected to discuss the choice of this controversial identity. I’m not sure if this relies on the climate of our society right now, where people are encouraged to make their own decisions, especially regarding their bodies, and we are discouraged to tell them otherwise.

I’ll argue that this social cohort it part of a pit stop on the slippery slope that legalizing euthanasia initiated. We can now cut-off limbs if we don’t want them anymore or end out lives when we feel like were done with those too. Harsh statements, I’m aware. But when we consider that this opinion neglects the mental dysphoria associated with a trans-abled perspective, and that euthanasia is much more complicated than simply ending a human’s life (especially when the arguments of dignity and pain are factored in) my argument certainly becomes weak. However it is hard to let myself agree that the choice to become disabled should really be a life choice that we have a right to because you’re not just making that choice for yourself. There are other people involved in that choice.

Which images come to mind when I ask you to think of a person with a disability? Does your fictional disabled character need others to assist them in their everyday lives? I’m willing to bet that whichever image you conjure up includes someone who needs the support of others to function properly in society. If you get to make the choice to become disabled, you aren’t just choosing for yourself, you are choosing for the other individuals in your life too. You are choosing to disrupt their lives and to make you a top priority on their list of to-dos. My disability affects my boyfriend, my mother, my sisters, my co-workers; it affects anyone who must accommodate the limited mobility of my right arm. They do not think of it as a negative situation, but I would be lying if I said they never got frustrated or annoyed. Other people do not just have to accept your disability, they have to accept, support, and literally help you through it. If we return to the comparison of transgender individuals in relation to my argument, their life choice doesn’t exactly require personal assistance for the rest of their lives, just a certain level of acceptance, emotional support and respect (in my inexperienced opinion).

I do not agree with the position of choosing a disability, although I can understand that feeling alien in one’s own body is a very real struggle for some that can only be resolved by changing their physical appearance.  Yet I am coming from the perspective of a physically disabled female who struggles to complete tasks like shaving my armpits, washing the dishes, or walking my dogs. I deal with the mental distress of wanting a working arm, of feeling like the one I have isn’t my own anymore, but knowing I do not have the choice to change it. I see it from a perspective that knows being disabled wasn’t a decision for me, and from a perspective that sees disability as a situation that requires all hands on deck. I cannot see it as a decision we deserve to make. Trans-abled people receive what they want after becoming disabled, and I think I can speak for all individuals with disabilities (not by choice) that we did not get what we wanted.

Link to Referenced Article:

Becoming disabled by choice, not chance: ‘Transabled’ people feel like impostors in their fully working bodies

“You Don’t Look Like You Have a Disability”

What does disabled look like? Unfortunately some people believe that question has an answer, But I believe you’re wrong if you can confidently explain to me what a person with a disability looks like. I will still assert that you’re wrong even if your explanation includes an exhausted description of all types of disabilities. I say this because that question shouldn’t be asked, or answered.

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