DISABILITY…..DYNAMIC DISABILITY.

This past week (October 17 – 23) was Invisible Disabilities Week, so I wanted to talk about that a little bit. As we all know, I battle multiple autoimmune diseases. These are invisible, but their impact on my life, if you look close enough, is not. The word “disability” often has a negative connotation and is viewed as some kind of “weakness” or being “less than”. Well, “disability” as per the Oxford Dictionary is “A physical or mental condition that limits a person’s movements, senses or activities.” or “A disadvantage or handicap, especially one imposed or recognized by the law.”

According to Kenya’s Persons Disabilities Act, “disability” means a physical, sensory, mental, or other impairment, including any visual, hearing, learning, or physical incapability, which impacts adversely on social, economic, or environmental participation.

Whenever we hear the term “disabled”, we often have a certain picture in our mind. We may think of a wheelchair, a cane, crutches, or other types of mobility aids. However, in reality, disabilities are very diverse; they can come in different shapes and forms – and many of them are not visible from the outside at all! 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! 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 relative 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.

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 will not 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!

Moreover, with chronic illnesses, the needs for help may differ compared to other forms of disability.

Every disability is diverse, and no two people with the same diagnosis have the same story to tell. Our needs are very individual from person to person. But we all have the right to 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 to get rid of the stigma that is attached to the word “disability”. Many people react in very weird ways when I say that I am disabled, and they do not understand why a young, “normal” looking woman would say that about herself. But the thing is: disabled is not a bad word; it is not a dirty word, and it does not mean you are less than. 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 should not 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!

A very important factor in this is 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 do not fit a certain stereotype.

I was not even aware of what invisible disabilities were until I was diagnosed with a chronic illness myself and had to start advocating for my own rights. I had to dismantle internalized ableism (the discrimination and social prejudice against people with disabilities on the belief that typical abilities are superior), and sometimes, I still struggle with these things and doubt myself. But it should not 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. In my opinion, accurate and realistic representation is one important step in this.

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.

The Government of Kenya recognizes me as a person with a physical disability. I have what I have come to know as a DYNAMIC DISABILITY because my needs and abilities are different from day to day. This distinction is very important because, in mainstream culture and media, “disabled” usually refers to people with static and visible disabilities. If I tell somebody that I am disabled, I must explain that not all disabilities are visible and also not all disabilities are static. The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa.

Dynamic disabilities come with their own set of challenges. For people with gastrointestinal conditions, unlimited and private bathroom access is hugely important. For people with fatigue, being able to work while lying down might be the only thing that makes work possible and for people who experience cognitive impairment (that difficult-to-define thing we call brain fog), flexible work hours are imperative. All of these accommodations are dynamic, and in order to ask for them, I might need to convince a healthy person that I really need them. If my disability is also dynamic, then I will need that person to believe me when I explain why I only need my requested accommodations some of the time. But that is because I do need accommodations some of the time. I am chronically ill, and I am disabled. In order to move through the world safely, I need to think about my body’s needs all of the time. But on low-symptom days, I’m able to navigate the world like an able-bodied person. My disability is dynamic. My experience of disability is valid and more common than you might realize.

I have things that I simply can not do, e.g., opening bottles, washing clothes & cooking. There are other things that on good days I am fairly able to do but on other days I can not do e.g. getting up from bed by myself, doing my buttons, getting up from a sitting position, showering, tying my hair, raising things above my head, going up the stairs/ramps, etc. so the prospect of even living alone is unfathomable for me. I can not do for myself those things that you might consider imperative to survival, and if that is not a disability, then I don’t know what is!

Remember: No matter how your disability affects you, nobody has the right to invalidate you.

I hope that you have learned something about disability and chronic illnesses. Kindly share this with a friend or family member, and let’s keep the awareness train going! Let us learn, educate, and empower! Thank you, and till the next post, love, and light! 💜

Partly borrowed from https://www.reastrawhill.com/post/what-is-a-dynamic-disability and https://medium.com/age-of-awareness/my-disability-is-dynamic-bc2a619fcc1