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- The Power Of Words- Yes, How You Speak About My Conditions Matters! - September 22, 2019
I don’t know about anyone else, but growing up my family always told me “sticks and stones may break my bones, but words can never hurt me”. Well, I’m not sure that I believe that to be entirely true, because the reality is, words DO have the power to either hurt or empower someone. I had two separate encounters in three weeks that inspired this particular post. As I’ve matured and become more comfortable with myself, so too has my comfort level in very openly, and intimately, discussing my conditions. I try to nurture an environment where those closest to me feel comfortable enough to ask me questions. My thoughts behind this were that if I allowed people to feel comfortable asking questions, I could try to steer the narrative, as well as (politely) educate others on what is appropriate versus inappropriate. That being said, humans are not perfect and sometimes missteps and ill-chosen words are said, and offense is sometimes taken.
I will always answer a question, however, that doesn’t mean that one’s language does not matter. Below, I’m going to state each of the questions word-for-word as they were asked and highlight why each was offensive, as well as offering an alternative to the question.
1. What is wrong with you?
This was the most offensive to me, and it would have taken a huge chunk out of my pride a few years ago. First, asking someone “what is wrong with you” immediately suggests that their state of being is deviant, not of the normal or average. I will resist the urge to be hyper-technical, but my state of being is normal to me, whereas being able-bodied is not. What would stop a person with a disability from asking that very question to an able-bodied person? Can you imagine the offense that they would feel? Well, it goes both ways.
May I ask why you walk the way that you do?
If the question was asked in this manner, I would feel so much more respected! I do recognize that my walking is unique, and I do not fault someone for recognizing that, or for being curious. However, when you chose to empower their being, instead of diminishing them, you will get a lot further; at least that’s the way that I view it. By asking the question in this manner, you put the person with a disability in a position of power. Be mindful too that you may not necessarily be dealing with a disability, but a limitation such as an injury, or prior surgery. This language is inclusive as opposed to divisive.
2. Would you be different if it were possible?
This question isn’t as directly insulting or blatant. That being said, it is still a thorn in my side. I suppose it’s because it makes me feel as though my life is less valuable, or not as amazing because of my conditions. In a post that I dedicated to Claire Wineland, I discussed how Claire inspired others to live their lives and find the beauty within it, despite sometimes being sick. You can find that post here (http://iammorethanadisability.com/life-lessons-of-love-illness-and-acceptance-a-tribute-to-claire-wineland/).
I would be lying to someone if I said that I haven’t thought about a life without Hydrocephalus and Cerebral Palsy. I think I’d like to spend one day without either condition. That being said, I wouldn’t want a life without the very things that made me who I am. That isn’t to say that my entire identity is made up of those two elements, I am more than the sum of them. That being said, so much of who I am was influenced by the things I learned from my lens on the world as a person with a disability.
Is there something that is difficult for you to do because of your conditions? How can I support you?
Rewording the question in this manner does two things: one, you acknowledge that yes, the reality is that some tasks are difficult and that assistance could be needed, however, the emphasis is on inclusion and independence, versus another taking charge of the situation and doing it their way. This is something I experience at work frequently. The reality is that some tasks are more difficult than others. But with support and teamwork, we can divide tasks based upon strengths, instead of highlighting weaknesses.
Self-esteem, self-worth, and identity are three things that are so intimately connected to each other. Each of those is also largely influenced by other’s perceptions, and the words they use to describe us. Be mindful when choosing them. Be respectful by asking. Be kind! At the end of the day, we’re all trying to do the best we can with the cards we were dealt. The world would be exponentially more united if we were kinder, more understanding, as well as forgiving of each other and the blunders that we sometimes make.
- Depression and Disability- No, I’m Not Happy all the Time - September 13, 2019
When I first began IAmMe I made a promise to never shy away from a topic, no matter how difficult or embarrassing it was to discuss so publicly. This past weekend while at work, a client asked me very bluntly “why was I always so happy and cheerful?”.
Yikes! Talk about a loaded question, right?
It made me stop and think because this wasn’t the first time I’ve been asked a variation of that question. Most people in my life recognize that generally speaking, I do have a pleasant and positive disposition. That being said, I’m human first and foremost. More than that, I’m a human with a disability and a chronic, volatile medical condition, so I decided it was time to be open and communicate something that I haven’t yet discussed on the blog.
Disability and mental health! The American Association on Health and Disability published an article that highlights the symptoms of depression and the prevalence of its manifestation in individuals with disabilities. The article explains that “many studies on youth with disabilities and depression address depression in the context of other research outcomes (e.g. pain and quality of life). Since pain is associated with disability and correlates with depression, it is understandable why so many individuals with disabilities suffer from depression, it was found that chronic pain had a substantial impact on the children’s lives.” https://www.aahd.us/2008/03/depressive-symptoms-and-clinical-depression-and-people-with-disabilities-prevalence/
I was first diagnosed with situational depression shortly before my 21st birthday. Situational depression is described in The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as “an adjustment disorder with depressed mood’. Simply put, situational depression is often linked to a specific traumatic event or a significant change in a person’s life. Research shows that situational depression typically occurs within three months of the event or change.” https://www.sacap.edu.za/blog/counselling/clinical-depression/
After a very traumatic night of complications in relation to my Hydrocephalus, my family noticed changes within myself. I became withdrawn. I no longer found happiness in the things that once brought me immense joy. I slowly became a shadow of the woman I was prior to the event. I remember sitting with my mother in the hospital when the discharge nurse suggested that I begin therapy for depression.
Therapy, what? Depression? No. Surely you’ve got that wrong. It baffled me that here someone was, tossing out a word such as “depression”. Of course I was depressed. I had almost died. How else could I have mentally responded? Right?
I decided it was time to talk about this so that I could dispel the shame that I felt at that moment. The shame that many others have felt when they first heard that word, or diagnosis. Also, to come to terms with my humanity. In the seven-ish years that have followed, I’ve now come to better terms with the trauma that I have experienced. Thankfully, that means that I’m also more informed and prepared for how to handle the symptoms the next time I have another medical scare. I learned how to more effectively, and healthily cope, and it stemmed from the initial diagnosis that I, at first, greatly resented.
If you or someone you know suffers from mental illness, you are not alone! You did nothing wrong! You are not broken. You, in my eyes, are a survivor and a warrior.
A part of the reason I decided it was time to write this was to bring awareness, but also, to prompt acceptance and accountability. No, I’m not happy all of the time, and that is a part of the awareness piece. To expect that of me, or anyone is setting them up for failure and a brutal fall from grace. I must make peace with the fact that this is something I will always deal with, but now I am stronger and better prepared to do so. That is something I must accept. Lastly, I have to be accountable to myself and the role that I take in how I deal with the (medical) events of my life. I have to decide whether I am going to be a victim of circumstance, or a victor of life, despite my challenges.
And that is what I am challenging you to do for today on!Read More »
- Life lessons of love, illness, and acceptance- A tribute to Claire Wineland - September 3, 2019
Role models. These are the people in our lives that we look up to. They often serve as examples of what we are trying to achieve. Growing up, I cannot recall having a role model that looked like me, had a similar medical condition, circumstances, or something for me to strive towards. There weren’t dolls to be bought in the store. Adaptive equipment weren’t tools to aid my success, rather, serve to make me stand out more than I already did; versus standing taller. This reality changed for me when I stumbled upon Claire Wineland’s Youtube channel. If Claire Wineland’s story isn’t one that you’re familiar with, here is a brief overview. (I will also embed links to her foundation’s page and Youtube at the end of the post). Claire was born with Cystic Fibrosis. Cystic Fibrosis is characterized as ” a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.” (Cystic Fibrosis Foundation) https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
Claire’s mission was to encourage others to find their life’s purpose, to live a deeply meaningful life, and to change the way society talks about and views those with illnesses. On the one year anniversary of her passing, I’m celebrating her mission by reflecting on the three powerful lessons she taught me.
- Living a life of purpose.
- Power in illness.
- The freedom in acceptance.
Claire was quoted saying “death is inevitable, living a life you are proud of is something you can control.”
Society’s current dialogue around illness and mortality is less than positive. It leads one to believe that an individual cannot live a deeply meaningful, beautiful life because they are less than well. Claire made me believe that society couldn’t be more wrong. My life didn’t lack purpose because I was sick. My life wasn’t less valuable because there was a possibility that I could die as a result of my condition. I learned my purpose and mission in life because of my illness(es). In that way, these conditions were not my enemy, but my partner. They were an ever-present reminder to live my life so completely and fully. There is incredible power in that revelation.
Acceptance. Freedom. These were the keys unlocking the chains of fear. I remember being very young when my family explained to me (with age-appropriate dialogue) the reality of my conditions. I had grown up with such knowledge and intimacy with the reality of my circumstances, and what that meant to my quality of life. In my twenty-seven years I can only readily think of three times in which I was sick enough that I feared the pain, and what I knew could be the reality of my death. I had a fairly difficult conversation with my medical team this past December. Truthfully, I’ve not yet completely processed it. However, those three memories, they made me understand that the talks I had with my family growing up were necessary because death could be a possibility. What was more, when I stopped fearing the “what ifs” and the “could” I was freed.
In honor of Claire, I am refocusing on my personal call to action. I am putting an end to the fear that could have crippled me. I will no longer fear the possibility. I will no longer use my conditions, or my mortality, as an excuse or a crutch to not do what scares me more than my mortality: to love and be loved. To try everything that scares me because I don’t know how others will respond. To walk into a room unafraid, because I know that I am no less beautiful or important than my peers. Claire’s mission was a gift. I intend to honor her by remembering these lessons and being better because of them.
If you’d like more information on Claire or her foundation, Claire’s Place, see the links below.Read More »
- Chronic Pain- 3 Difficult Realities of Living with an Invisible Disability - May 26, 2019
I am an individual with two medical conditions: Cerebral Palsy and Hydrocephalus. Each of them comes with their own sets of challenges, however, I have noticed that people around me are more forgiving of one than the other. The reason behind that, I believe, is that one is more visible than the other. When the symptoms of a disability or illness are visible, it is easier for people to be understanding; Invisible illnesses, not so much.
According to The Invisible Disability Project, invisible illnesses are defined as “An ‘invisible’ ‘non-visible,’ ‘hidden’ ‘non-apparent,’ or ‘unseen’ disability is any physical, mental, or emotional impairment that goes largely unnoticed. An invisible disability can include, but is not limited to: cognitive impairment and brain injury; the autism spectrum; chronic illnesses like multiple sclerosis, chronic fatigue, chronic pain, and fibromyalgia; d/Deaf and/or hard of hearing; blindness and/or low vision; anxiety, depression, PTSD, and many more.” https://www.invisibledisabilityproject.org/
The invisible illness that most impacts my life is chronic pain.
Chronic pain is a constant companion that I never asked for. It is the cloud that is always following me around, threatening to rain on my parade, so to speak. Ironically enough though, the pain itself is not the most difficult aspect of this reality. This post is dedicated to outlining three of the difficulties of living with pain- my invisible illness. (These are my experiences, and there are certainly more!).
- Understanding that no matter what you do, you will always be in pain.
I remember growing up thinking that there would be one day I would wake up and would be free of my disability and the pain that subsequently came with it. I also remember the doctor’s appointment where it was made very clear that this would be something I wouldn’t simply get rid of. I went to see my orthopedic surgeon a few days after I had botox injections. Botox injections “work by blocking the chemical signal between nerves and muscles that makes the muscle contract or tighten. This provides reliable relief from spasticity symptoms including pain and muscle stiffness. It has been used safely in thousands of patients for over 25 years.” (Rady Children’s Hospital of San Diego) https://www.rchsd.org/programs-services/cerebral-palsy-center/services/botox-treatment-for-spasticity/ I told the surgeon that I noticed a slight difference, but that I was still in pain. It was then that he said “Ashlee, you have a neuro-muscular condition. There is only so much that we can do to treat that, and the pain, too.”
It was in that moment, seeing the look on his face, hearing the matter-of-fact tone in his voice, that I took the first step in my journey to accepting the reality that pain was going to be a varying constant in my life.
- Accepting that some days will be harder than others
Living with chronic pain is difficult because, in my experience, no two days are the same. As I’ve stated previously, the pain is always there, yes, but the degree of it is varying. Today, for example, is one of my more difficult days. Not only are my back and hips bothering me, but an old scar and incision site has joined the party. My advice to you in helping to deal with this is knowing your body’s limits and listening to its needs, and do not push the limitations. I’m a fairly stubborn individual. I like to be on the go and doing what I have to. However, too often I would do too much despite being in immense pain, and it was my downfall. Did I get everything I needed to complete? Yes, but I paid for it with high levels of exhaustion, spasticity, and difficulty. Listen to your body. Understand that it is okay to know your limits.
- Acknowledging that some individuals will struggle to accept your reality because it is not one that they can see
This is perhaps the most difficult one for me. There has been more than one day where I could not attend classes because I wasn’t well. When I told that to my professors, sometimes I was met with “well, you don’t look sick”. Well, true. I wasn’t unwell in the sense that I had a cold or the flu, rather, my body was unwell. To sit upright and listen to a lecture, or take notes was, at times, too much for my body to handle. That’s the thing about having an illness, condition, or disability that isn’t quite visible. People struggle to understand that some days are indescribably difficult.
Most times, I am the chatty, tea-drinking, happy-go-lucky woman that most people are accustomed to seeing. It is hard for some in my life to understand that just because my smile is wide and bright, does not mean that there isn’t something lurking below the surface. Dealing with an invisible illness is difficult, and if you are one of these warriors, I applaud you! I hope this post helps people to understand that there are many faces of invisible illnesses, such as chronic pain.
Cell phones are a conveniently sneaky device. I picked up my phone moments after my hands became so spastic that I almost knocked over my drink because I couldn’t steady my hand. This, picking up my phone, is one of the tactics I use to quickly hide my embarrassment.
Life with chronic pain is not only laying down. It is not always being curled up into a ball with tears streaming down your face. It is powering through, despite it. The sooner people recognize this, the easier it will be to support us.Read More »
- Understanding that no matter what you do, you will always be in pain.
- No Longer Hiding My Authentic Self - January 3, 2019
Happy New Year, readers. I hope the first few days of this year are treating you well. So much comes to mind when I think of the phrase “new year”. It’s a fresh start, a clean slate. It’s the forgiveness to leave mistakes and past pain in the rear-view mirror. It’s the promise of an opportunity to move on. For some, it is the motivation for goals, resolutions, and dreams one is tired of dreaming about. It is a call to action. Or at least, it is for me. This year the goals for me are simple- well, simple to say, more difficult to do.
Show the world my true, authentic self.
Under those central goals are much more specific ones, however, I felt as though it could be best summed up in those two resolutions. If you know me personally or have followed the blog for a time, I have discussed the love/hate relationship between my self-esteem, my disability, as well as my identity. For me, this trio is my perfect storm. For too long, I have tried to separate one from the others, maybe two. I have fought for years to establish my identity beyond my disabilities. My self-esteem was poor because I made the mistake in building my self-worth on the validation of others. I wanted to be known for Ashlee, not the young lady with disabilities. It was this internal fight that made me realize something important: I am a young lady that is made up of so much more than my disabilities, but when I tried to strip that factor away, I was unknowingly telling myself that there was shame to be had in my physical condition. This epiphany inspired today’s post. It made me reflect on everything that I do to try and hide my physical condition from the world, or lessen what they see.
- I walk with a cane so that my muscle weakness is not quite so apparent.
- I use a wheelchair when I’m expecting to go a further distance, so that people are unable to see my limp.
- I sit down at parties so that people around me cannot see my legs quiver when I have reached my threshold.
Ironically, I went out and about yesterday to take pictures and I demonstrated some of the very behaviors I do to lessen my disabilities’s visibility. I leaned against a tree for support. When my friend was taking the photos, I specifically asked to throw my cane into the snow so that it was not visible in the pictures. Honestly, trying to hide these things from the world is quite silly. When I’m not engaging in these behaviors, the world is inevitably going to see the truth I’m trying to hide; and always engaging in this game of hide-and-seek is quite exhausting. So I am not going to hide anymore. I’m going to stop hiding from the very things that make up parts of my identity. I will no longer fear falling, because I know I have the strength to stand tall again. I will not shy away from the limp that I gained because of the blessing that is my ability to walk. I will be unashamed of the cane that is my companion, because it is similar to a friend’s support. I will do this with the knowledge that it is okay. I am both different, and disabled, and I’m damn proud of it. I will embrace this, with the genuine hope that in my resolution to not hide, I am able to connect more completely with others.
How can people truly see you if you’re hiding your authentic self from them? So, this is me. This is who I am. I’m ready to stop hiding what makes me, me. This is my New Year resolution. This is my everyday fight, and I’m ready.