Grief and How It Relates to Disability

Grief and how it relates to disability

18 Aug 2024 02:02

 

If you ask someone to relay their personal experience or experiences with grief, most will respond with an event linked to the passing of someone close to them. Few, if any, will relate their experiences to their own grief after being diagnosed with a chronic illness or after becoming disabled. 

Most people don’t even consider that we experience grief as we process the changes that we in the disabled community go through. People often only associate grief with the loss of a loved one, significant other, or someone close. 

While grieving after a diagnosis or disability may not equate to the same grief that others may experience, it is no less valid or traumatic. 

Anytime our physical or mental health changes and we lose a part of ourselves or our abilities, part of the acceptance and healing process is grief. 

We grieve that part, or parts of ourselves that no longer function the way they did. We grieve the ability to perform tasks without consciously having to think about how we are going to adapt, or having to use adaptive devices to complete them. Or, to have someone else do them for us. 

We grieve the loss of memory, or our cognitive ability to think and respond quickly. 

We grieve the changes to our physical appearance that often comes with disability and can struggle with feeling unattractive, or unappealing to others. This can lead to a fear of intimacy, a fear of being judged, a fear of not fitting in where we used to. 

We grieve the loss of friends or even family members who find it difficult to be part of our lives after diagnosis or disability. We grieve the change in relationships of those who feel that their only contribution to our situation is to pity us. 

We grieve the loss of passions that we had that we may no longer be able to do, and we grieve the loss of independence, privacy, and dignity that comes with having caregiver support. 

We grieve for the dreams of who we worked hard to become in our careers or of our personal goals and accomplishments. We grieve our sense of self and our independence. We grieve all that could have and might have been. 

 

On the outside, most people don’t see what a disabled person has to go through to start their day, let alone complete a full day of disabled living. 

For some, the ability to sit up independently on waking has been lost. Imagine waking in the morning and having to wait for your spouse or caregiver to help you sit up. 

Imagine needing someone else’s assistance to use the toilet, shower, brush you teeth, and get dressed. 

Imagine needing someone else to prepare your food, feed you or assist you with eating, to cut your food like when you were a child, or put your meal in a blender because you can’t swallow solid food. 

Imagine not being able to cough, sneeze, blow your nose, or even breathe. Do you even consciously think about these functions? 

Am I getting too intimate? Unfortunately, this, and so much more, is the reality of life for many disabled individuals. If you go to my “about” page, you will see photos of me that would hardly give you the inclination that any of this is part of my life. 

It has taken an extraordinarily long time to get to a place of acceptance, and to get past the grief. But, the grief doesn’t stay away for long. There are several reasons that it will rear its ugly head time and again. It’s the gift that keeps on giving! For many disabled or chronically ill people, their abilities change, sometimes for the worse, and their disabilities progressively decline to the point that they need to find new ways to adapt, or have to add new items on their caregiver “to do” list. 

These ever changing issues along with situations that happen that present us with obstacles and challenges can trigger grief and the longing for who we once were and hoped our future selves would be. 

 

My intention in writing this post isn’t to be a downer, or to speak solely about my personal circumstances. The intention is to bring awareness to the life of individuals with disability and how grief relates to their personal situation.

 

While grief is a difficult topic of discussion, sharing your grief with others who truly understand can be very liberating. I doubt that many of us in the disabled community have escaped that grieving process. Even those who have pushed past their disabilities to become Paralympic athletes or who have accomplished extraordinary feats that no one expected of them, would most probably have experienced some form of grief at the beginning of their disability journey. 

 

Our personal grief or grieving process can be incredibly difficult for family or friends to understand. It’s also challenging for them to accept our need to try and do as much for ourselves, as independently as possible. Having even a small amount of independence, regardless of making a mess, or possibly breaking something, gives us a tremendous sense of accomplishment and satisfaction. While we may be able to accomplish something one day and not the next, we still appreciate the opportunity to try. If we need help, we will ask, but we appreciate being given the freedom and opportunity to find our own sense of “normal”, whatever that looks like for us. 

In certain instances, the grieving process is one experienced directly as a parent or sibling of someone disabled. Imagine a parent who has to raise a disabled child that can’t speak for themselves, or do for themselves. That parent, sibling, or grandparent, will feel that devastating grief for their child. For all the hopes and dreams that they had for who their child might become; they now watch helplessly as that child goes through challenge after challenge to accomplish what we might consider the most menial of tasks…things that most people generally take for granted are lost to many of us. 

 

For many disabled individuals, redefining who we are and what our new reality and journey looks like or means to us takes a lot of trial and error, but ultimately, it’s the difference between existing and quality of life. I don’t think that there are many of us who are, or would be satisfied with merely existing. Even those who are so severely disabled that they rely on someone for complete care deserves to be able to control at least how that care is given to best suit their needs and desires. Taking away that right leads to more grief that often brings on depression. 

If you are a spouse or partner, a family member, a friend, or caregiver to someone who is chronically ill or disabled, I hope this post will enlighten you on a subject that most of us who are disabled don’t speak about or share very easily. Grief and how we grieve is so intimate and personal and we all deal with it differently. 

Personally, I haven’t shared my own grief because I have so many people around me who constantly remind me that I should stay positive and strong! While this isn’t necessarily bad advice, and we can grieve while still experiencing other more positive emotions, it can be slightly toxic as the grieving process is necessary. It is possible to do both, or experience great positivity one day and then be full of grief the next day, but as I stated, we all process differently and in our own time. 

 

One of the greatest gifts you can give a disabled or chronically ill person is the respect and understanding that their lives have changed in ways that are monumentally difficult for them to grasp in a short period of time, and that the emotional and mental healing process will take time with lots of ups and downs. We may appear to you to be ok and all put together on the outside, while still grieving and feeling anything but put together on the inside. 

The grieving process can take on many forms like anger, distance, isolation, and denial, just to name a few. 

Compassion, kindness, space, respect, understanding, and a great amount of love are the best gifts you can give someone experiencing and processing their own grief. If we choose to talk about it and share it with you, please be ever mindful not to invalidate our feelings or try to sweep them under the rug. We don’t expect you to understand it all and it’s ok to voice that to us. But expecting us to just shake it off, or pushing positivity on us is not the right message. Asking us what you can do to help, or just offering support by listening is what most of us are looking for. It can be an extremely scary and lonely place for us. 

 

How do you handle the grieving process when it triggers you, or how do you accommodate your loved one who is experiencing personal grief?

 

Please share your story.  It may be what someone who is newly diagnosed needs to know that they are not alone in their time of grief.  That the grieving process is necessary and “normal”.  It may be what motivates them to continue on in their difficult journey rather than giving up!

You could be that difference in someone’s life!

 

Thank you,

xo Angel

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What Defines Disability?


MOST able-bodied people I have spoken to feel that they have a relatively good and informed idea of what it means to be disabled...or rather, what it means to be classified or “defined” as disabled. Now let me add a disclaimer here...I am authoring this from within Canada and I am now, and will always be using Canadian information and statistics in my blogs and discussions.  I well realize that if you are in the United States, or somewhere abroad, first of all thank you for visiting and/or joining our Community Forum, but secondly, it should be easily understood that each country will have different classifications, determinations, and rulings than we would in Canada.  So it's ok if you don't agree, but what I give you is Canadian information.

So, I will say it again, that most people that I speak to feel that they have a fairly good understanding of what the "official classification, determination, or definitions" of being disabled are. Yet, every day, I come across those who have created their own parameters of what someone who is "disabled" should look like.

The truth is  that while to some degree their concept might be correct, their parameters and understanding need some major expansion and education.

As seen in the diagram below, Websters’ Dictionary’’s definition is rather succinct and could use some further interpretation. 

 

 

Let's elaborate on this definition somewhat.

 

( From the Canadian Federal Governments’ Website definition of Disability)

“Disability is any condition of the body or mind (impairment) that makes it difficult for the individual with the condition to perform certain activities and to interact with the world around them.”

 

While this is a broader definition than many I have found, there is still a great deal of information that is missing like the word “accessible”, or it could say,; “that makes it difficult for the individual with the condition to perform certain activities, and to interact with and access the world around them.”

For example:  In my particular situation it's very obvious that I have a disability because I rely on a wheelchair for mobility.  My hands and legs are obviously paralyzed, and if I am out of the house, I have to wear a neck brace for stability.  When someone sees me, they wouldn't normally question my disability, but they do assume that the world around me is accessible to me in every way. Many of them are shocked when I tell them about a place that I can’t access. But accessibility isn’t just about being able to get into a place, it’s about accessing everything that is in that place and accessible to everyone else like; refrigerated or freezer sections of the grocery store where you have to open a door to retrieve an item while manoeuvring a wheelchair, or trying to reach shelves; paying at a cashier’s terminal and the card reader is too high to reach or see; and there are a great number more that could fit into a  book, but my biggest accessibility issue is the assumption that because an establishment has an accessible washroom, it’s accessible to everyone. I imagine that many disabled individuals have an issue that they could complain about.
My particular issue is that for a paralyzed individual, a washroom with one grab bar on the wall side of the toilet, and a super low toilet seat makes an accessible washroom pretty much inaccessible for us!  If I can manage to reach the grab bar on the wall without falling face first into the toilet because I have very low muscle tone in my core, and I can pull myself onto the toilet, I then have the extremely difficult issue to face of getting of the toilet which sits lower than my wheelchair seat, and as a quadriplegic, I have little to no tricep ability which is what I need to push myself up and off. There is also the issue that accessible stalls in a multi stall washroom don’t fit my power chair. I have often had to use the toilet with the stall door partially open, and I don’t have enough room to manoeuvre my wheelchair to get proper access to the toilet.   THIS DOES NOT DEFINE ACCESSIBLE OR INCLUSION!  Not to mention that many multi stall washrooms have doors that you need to pass through to get to a stall that are a huge challenge to open while controlling a power wheelchair and I have also had the same challenges with the doors in my manual chair. What able-bodied people don’t realize from the perspective of a paralyzed individual is, that if we have to #2, our bowels (and bladders) are paralyzed too. So if we are fortunate enough to be able to feel the pressure of having to relieve our bowels, it’s pretty much an immediate washroom issue or there is an accident. We cannot assist a bowel movement nor hold it. Muscles in that area required for those functions are paralyzed. Being able to access a properly accessible washroom should be a basic human right in our country.  RANT OVER, lol! 😂 


LET’S get back to the focus of this blog which is defining disability…While my outward disabilities might be easy to notice, what isn't obvious to many able-bodied individuals is the other disabilities and chronic illnesses that I also have, or the multitude of medical conditions that are associated with the very prominently visible disability that can be excruciatingly painful, debilitating, life-threatening, or  fatal.

Now what if I had all those issues without the visible aspects of the wheelchair and the obvious paralysis?  Would you still consider someone with those chronic illnesses disabled?  Even if nothing was visible to you?

There are many conditions or chronic illnesses that fall under the classification of disability that aren't considered to be valid disabilities by the general public at large.  Especially invisible disabilities, the ones that aren’t immediately outwardly obvious to the observer.  There are those who unfortunately, do not consider many invisible conditions to be part of the "disability" definition.   These  invisible disabilities can be just as debilitating to an individual as one that would be very noticeable.

 

These invisible disabilities can include:

*Vision Impairment

*Memory Issues

* Learning Difficulties, Autism, and other neurodivergent diagnoses.

*Communication Challenges

*Hearing Impairment

*Cardiac Issues

*Severe Arthritis

*Mental Health

*Emotional Health

*Social Challenges

*Anxiety and Panic Attacks

*Traumatic Brain Injury

* Early onset of Parkinson's, Dementia, or Alzheimer's (I specify early because in early stages they are generally not outwardly evident disabilities)

*Chronic Illness (the list of chronic illnesses that may not show outwardly is huge)

*and so many more!

 

The point that I am intending to clarify is that while we tend to classify or refer to disabled individuals as a single population or demographic, we are actually a very diverse group made up of individuals with varying conditions from any age, religion, race, ethnicity, varying degrees of disability, and specific needs.

I live in the beautiful country of Canada, and as of 2021 census statistics, almost 20% of the Canadian populations is "officially" classified as disabled.  I have no specific information on these statistics, but I can guess that these numbers are probably higher due to many individuals themselves not considering themselves part of the disabled population, so they do not register as such on the country’s national census form. It’s also important to realize that the census only counts people with disabilities over the age of 15 which unfortunately misrepresents the demographic by a significant percentage.  I personally think that gives a skewed reference percentage and perception of actual demographics.  Regardless, 20% is not a small number and unfortunately, that number is increasing every day .  Globally, disability accounts for the second highest demographic.   2023 World Health Organization’s data estimates that 1.3 billion people globally are disabled…that’s 16% of the population. It's high time that the disabled community was  more prominently recognized, respected and accommodated!

 

IT’S actually quite disheartening to this author as a disabled individual, to hear of, and see instances where  an abled person feels that they have the right and the authority, never mind just the sheer audacity, to school a disabled individual on why they are not disabled because they see them get out of a vehicle and look absolutely “normal”!

I can't tell you how many times people have said to me, "you don't look disabled", (and keep in mind that I am in a wheelchair) , to which I reply , 'What exactly does disabled look like?"

Many people seem to think that to be classified as disabled, you must look sick.  You can't be dressed nicely, or have your hair neatly styled, or wear makeup, or the best reply I have heard so far; "but you're smiling"!   So let me get this straight...in order to qualify as a disabled person by your obviously uneducated definition, I must look sick, dress shabby or wear pyjamas all day.  I can't look nice, and I should constantly be sad and look depressed?

Let me tell you, this Disability Club is a club that none of us wants to be in, and not one  of us had a choice!  Nor do you realize that just because you see us all put together on the outside, it doesn't mean that we aren't, or can’t be struggling big time on the inside.  You have absolutely no idea!

 

LOOK, I am definitely not going to make  light of depression, as I do struggle with it and have since childhood.  Depression is often a symptom or byproduct of many disabilities and chronic illnesses.  But that doesn't mean that I, or anyone who is disabled should be expected to be in a constant state of depression just because we are disabled.  It's a hard fight to work through depression and one can still be smiling while  being depressed.  The two are not mutually exclusive of each other.  Speaking for myself, I have become incredibly adept at putting on that mask which fools people by showing the outward appearance  of everything being ok when it's most definitely not.  Many of us do it.  We don't even think about it consciously...it just happens.  We don't want to project our pain onto others around us so we mask it.

I don't mean to imply that I  don't have happy times or that things are depressing all the time, but in my own situation, daily life is extremely challenging and comes with so many extra bonus issues that it can be very hard to be and/or appear pleasant at times, or all the time.  So, on goes the mask.  I don't like to reflect my pain or negativity upon others.  There isn't anything that anyone, especially a stranger, can do to help me, so why bring light to the issue.  It just makes people feel bad and pity me...I DON'T want pity.  It also seems to give license to those who know nothing about disability the opportunity to voice all the magic recipes and potions that they know will cure me…ugh!  The road to hell is paved with good intentions, lol!  I know that people think they are being kind and supportive by doing this, but if I’ve heard it once, I’ve heard a million times how taking this or that will cure me, yet I am still here with a disability…and prominently a spinal cord injury that doubtfully can be repaired with CBD oil, turmeric, oregano oil, etc.   I guess, without any intended disrespect, this author just gets a little tired of the misconceptions and lack of knowledge towards the disabled community from the abled community and I know I am not alone. *** A note intended specifically for any able-bodied readers, I know that there are a great many of you who do your best to support the disabled community and I mean no disrespect.  I am grateful on behalf of our community for your compassion and support. Unfortunately, fact is that only a small percentage of able-bodied individuals are even slightly knowledgeable about the disabled population and any efforts to draw attention to that is intended to reach those who need the education!

 

DISABILITY can arise from birth, can be acquired through illness or accident, or develop over time as a chronic illness (which already represents disability) deteriorates one to the point of possibly more noticeable or incapacitating disability.  Disability can be relatively mild and only affect an individual in a few very specific ways, or it can be debilitating, completely limiting one's independence and quality of life.

It is impossible for anyone to know or to be able to judge the limitations and challenges of another.  The responsibility of defining or classifying the abilities of another is not anyone's job outside of that individual themselves, or their medical support team!

 

WHILE my intention is not to come across as a belligerent or condescending, I do run into people who feel it's their right to question the validity of many disabled people.  I kindly and  respectfully ask that before you feel the desire or need to judge or define who is or isn't disabled, think  about whether your comments are harmful or helpful.  Whether they are even necessary to voice at all!  You may consider your opinion to be rather benign or you may think opining will be helpful, but questioning someone's disability validity is simply disrespectful and unwelcome to most.

Either kindly mind your own business, or try asking genuine questions about the person's  disability from the perspective of educating yourself instead.  Try supporting the disabled individual with kind words and compassionate gestures.  In everything that the disabled person is dealing with, whether those issues are obvious to you or not, the last thing they need or want is your two cents worth of something that you likely haven't got a true clue about.

 

DISABILITY already has its official definition that has been carefully described and evaluated to promote inclusion and understanding.  While the definition of disability definitely needs tweaking as far as I am concerned, please don't create your own misguided definition and terms that devalue our place in society.  We (the disabled community), shouldn’t have to redefine our demographic to be worthy of equality, accessibility, and inclusion!k

The definitions I have found that describe “DISABILITY” are woefully inadequate by far, but we will leave the work of changing those definitions and perspectives to  those who are the advocates for disability rights and we send them our gratitude, our love, and our support for continuing to fight for our rights, inclusions, and accessibility!

 

THE world desperately needs more love, kindness, and inclusion, not hatred and separation.  Think about changing your perspective instead of expecting other to conform to your misguided  expectations.

With love and all the best of intentions,
xo Angel

 

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Comments

Byron Woolcock
4 months ago

Thank you. Well expressed. Hopefully some of my fellow MCS/ES folks will contribute. There are now over a million diagnosed, half in Ontario.
I would like to contribute but at now 85 I’m battling local government, Re life threatening local smoke, full time. ….Re. My COPD 1941 UK Nazi bombing, MCS 1974, Long Covid 2021, (both Ontario.,)
Thank you for your witness . Take care.

Up Close and Disabled
4 months ago

Hi Byron,
Thanks for your comment, I am happy that my blog post resonated with you.
Sorry for the late reply. I had a few glitches with the website.

Your challenges, and I am sorry for all you have experienced, are a prime example of "invisible disability" and how important it is to understand that you can't base your opinions on what you can't see and don't experience!
I am grateful for your visit today and hope to see you back. Maybe you'll think about sharing your story in our community forum so that it can be used to educate others.
Wishing you well,
Angel xo

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