Have you ever asked yourself the question “am I disabled enough? Do my struggles even count as a disability?” And do your symptoms fluctuate a lot from day to day? Then maybe what you are dealing with is a dynamic disability!
Whenever we hear the term “disabled”, we often have a certain picture in our mind. We may think of a wheelchair, a cane or other types of mobility aids. But in reality, disabilities are very diverse, they can come in all different shapes and forms - and many of them are not visible from the outside at all!
Many people who do not fit into this typical picture of disability ask themselves, if they count as disabled - if they belong. Especially because disability is still very stigmatized in our society, it can be a very long and hard way for people to come to terms with identifying as disabled.
But why even identify yourself as disabled?
Some people are very impaired due to chronic pain or a chronic illness, for example. The relation between chronic illnesses and disabilities can be complex, because not all chronically ill people are automatically disabled, and not all disabled people are chronically ill! You can read more about this in my article: Chronic illness and disability- what’s the difference?
Many people who have chronic illnesses or chronic pain have very fluctuating symptoms, and they may experience days with hardly any symptoms or no symptoms at all. For that reason, many people feel as if it would be wrong to identify as disabled. You almost start to feel guilty and you get the feeling as if you are exaggerating- especially on your better days. You may ask yourself the question: “Am I disabled enough?”
But chronic illnesses can be extremely impactful because they are so unpredictable due to their dynamic nature. While there are some days where you can get through your everyday activities with ease, there may be other days where it is impossible to get out of bed because the symptoms are too severe. The course of chronic illnesses can be extremely unpredictable- and that can make it very difficult to plan anything.
Unfortunately, people with invisible disabilities experience lots of gatekeeping and are often questioned. We hear things like “but yesterday you could do this, so why can’t you do it today?”, or “Last week you didn’t need *insert mobility aid here*, why would you need it today?”. So many people are simply not aware, that invisible disabilities exist and that our limitations may differ from day to day.
Also, many people with invisible disabilities struggle to get an “official” grade of disability, especially those with rarer illnesses. Some are not even aware that their illness would make them eligible for one. But with an official disability ID you would be able to access help more easily, especially in the work place. In that sense, identifying as disabled can help you realize, that you have a right to accommodations and help if you need it, and that you do not need to struggle every day to just get through your daily tasks.
Am I allowed to call myself disabled as a chronically ill person?
This is where the term “dynamic disability” can help: Brianne Bennes explained the term like this in 2019:
“My disability is [not] static, it’s dynamic. My needs and abilities are different from day to day.”
You can read her full article here – a must read! When I read her article for the first time I had a full on "AHA" moment!
If you experience chronic pain or a chronic illness, where symptoms fluctuate a lot, your individual needs will differ from day to day. This can be quite a challenge! But since these limitations are often invisible (at least at first glance), it can be difficult for people to ask for help- and even more difficult to receive that help! It can also be difficult to ask for help, when there are days where you might not even need it - for example, requesting a mobility aid when there might be days where you won’t need any at all. Many people feel like they are not deserving of that help. But the fact is: some conditions can be highly disabling, and make it really hard or even impossible for people to carry out their daily tasks without help.
By identifying as “disabled”, those affected may have an easier time advocating for their own needs and knowing, that you have a right to receive help when you need it. In that sense, identifying as disabled can be an empowering thing!
And with chronic illnesses the needs for help may differ compared to other forms of disability.
While people with reduced mobility might require a wheelchair, someone with a chronic condition may require flexible work hours or resting periods in order to get through the day. For others, the ability to work or study from home may be crucial because transit would cost too much energy. Access needs differ from person to person, so it is important that we create an environment where we listen, and where we do our best to help without judging, and without drawing comparisons. For example: “I know someone with the same illness and they didn't need xyz!” – since no two people with the same diagnosis have the exact same experience, making comparisons is counterproductive and it only creates frustration. Many illnesses can come on a spectrum, so we shouldn’t require all people who are affected to function in the exact same way.
Creating access means removing barriers
While it is a good thing that we become more aware of physical barriers in our world (and there are still so many!), it is also important to remove barriers that are more invisible or not so noticeable, like refusing accommodations in the work place. Every disability is diverse, and no two people with the same diagnosis have the same story to tell. Our needs can be very individual from person to person. But we all have the right for inclusion, and the right to receive as much help and access as we need in order to be able to live a fulfilled and independent life.
We also need to do our best in getting rid of the stigma that is attached to the word “disability”. Many people react in very weird ways when I say that I’m disabled, and they don’t understand why a young, “normal” looking woman would say that about herself. But the thing is: disabled is not a bad word. Per definition, if you have any condition of the body or mind that limits you in your daily function and your ability to carry out daily tasks- you are technically disabled. It shouldn’t be such a taboo to use this word. My grade of disability does not diminish my worth!
Of course, it is a very personal and individual decision, whether identifying as disabled feels right or not. Use the word that feels right for you!
Representation matters
A very important factor in this is also accurate disability representation in the media.
The fact that we view disability as something static and visible, is because in most media disability is shown that way. Disability representation should be as diverse, as disability itself. We need more accurate representation in the media!
Nobody should have the feeling of not belonging, or not being allowed to be part of a group, because they don’t fit a certain stereotype.
I wasn’t even aware of what invisible disabilities are, until I got diagnosed with a chronic illness myself and had to start advocating for my own rights. I had to dismantle so many internalized ableism, and sometimes I still struggle with these things, and doubt myself. But it shouldn’t be that way. It should be easier for chronically ill people to reach out for help, to receive accommodations without being questioned, to be taken seriously and to be respected. And I think we all have to do our part until we reach that. And in my opinion, accurate and realistic representation is one important step in this.
No matter how your disability affects you- nobody has the right to invalidate you.
And remember: not all disabilites are visible, and not all disabilites are static.
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