There are hundreds of disabilities that around 14.1 million people in the UK have to live with daily. Including vision and hearing impairments, chronic illness, physical, mental, intellectual disability, brain injury and autistic spectrum disorders. All of these can range from mild to severe depending on the condition of the individual. But the majority of the time, these disabilities cannot be identified simply by looking at a person or even being around them for hours. It is estimated at around 70% of disabilities in the UK are not visible.
I was diagnosed with Rheumatoid Arthritis at 16 and Fibromyalgia a few years later. I have also suffered from depression because of this, ranging from low to high risk periodically since I was 14. RA is a type of auto-immune disease, which in short means my immune system attacks healthy cells in my body by mistake, mainly my joints causing pain and swelling. Medications for this suppress your immune system, which can lead to other issues. It affects my mobility and everyday life as I’m in chronic pain. I hope that in this article, I can show a few of the issues disabled people may face and how we can come together to change this.
Disabled people can experience all types of abuse, even forms like micro-aggressions, abandonment and gaslighting (questioning your sanity or reality of a situation). They are also more likely to receive abuse from relatives such as coercive control and financial abuse. Data collected from ons.gov.uk shows us reported cases in the UK from March 2019-2020. It shows how disabled men and women, experience more than double the amount of domestic abuse than all non-disabled adults. Even though disabled men were still not as likely to be domestically abused (9.2%) as disabled women (17.5%), they were too, more than twice as likely to be domestically abused than non-disabled men (3.6%). The available statistics are shocking to learn when the majority of our population are non-disabled. It goes to show, that even though disabled people are the minority in comparison, they still receive much higher instances of abuse. These stats are also right before COVID-19, lockdown restrictions have been the hardest time for disabled people because not only have many of them had to rely on others because they are shielding, but also the fear of catching the virus and the unknown of that too.
Often, those who do not present as disabled have to deal with a lack of understanding and misinformation from some able-bodied people. This means that by the time they have adapted to their condition, they then have to prepare for the ignorance that comes with any disability. This makes accepting and coping with your diagnosis even harder. I have had someone say that because they don’t see it, they can’t empathise that well, which completely invalidates those with hidden disabilities and their experiences. This further demonstrates the ignorance that something is not worth believing if you can’t see or feel it yourself.
Talking about how unwell we are isn’t exactly fun for anyone. From 16 to 19 (I’m now 22) I would avoid the topic of my disability completely. I had a very bitter and stubborn reaction to the diagnosis and would often ignore it, which made me deteriorate physically and mentally. I was embarrassed, ashamed and scared of my condition. I still fear it sometimes. We do appreciate that some people won’t understand and that is mainly due to not relating or a lack of education on the matter. Many non-disabled people are amazing, selfless careers or support systems for disabled people. My family have been supportive and accommodating to my illness and I’m lucky to have an amazing role model who is my grandmother, who also shares the same genetic condition as I. This isn’t the case for many. People who develop a disability or long-term progressive illness will tell you that some people in your life will disappear soon after. Usually, because they cannot handle the circumstances supportively.
Since having my illness, I have noticed that respect for disabled people is something that is generally overlooked by the rest of the able-bodied population. This attitude also contributes to the lack of understanding or empathy for those who cannot live up to society’s norms and toxic expectations of others. I think that disability awareness should be taught more in schools. In my school they covered topics like bullying, racism, safe sex and crime prevention, but nothing that teaches about ableism to alleviate the stereotypes, generalisations and misconceptions around disabled people. Having inclusive conversations at school means that future employers and business owners won’t be so quick to assume that all disabled people are risky business decisions or liability because not all of them will be, as individuals we all have different pain thresholds, outlooks on life, mental strength and determination. There are substantial gaps between how many working-aged disabled people have access to employment, qualifications and quality of life. Leading to them being more likely to live in poverty than non-disabled people. But the issue is that a lot of people see no point in making space in society for disabled people because ableism is an existing hate crime.
These conversations in schools would help with avoiding sensitive topics because someone won’t know what is right to say or ask a person if they don’t understand what invisible disadvantages mean (in the instance that you’ve been told they have a hidden disability). Conversations such as what someone’s future is going to look like in regards to money, career and ambitions can come from a good place, but can ultimately leave the other person feeling drained if they have a life-long condition. It can be hard for someone who did have many ambitions, that they now have had to let go of, discuss these topics due to having health setbacks and concerns to process. Many disabled people can find the future quite frightening, especially as a large amount have a progressive illness that worsens with age.
Over the years, public spaces have become more accessible and safer for disabled people. Public housing usually gives priority to those with health conditions. There have been more legal and welfare support for disabled members of the public, but often hidden disabilities are still taken less seriously by some. There is little to no representation of people with conditions like mine or similar in the media. If there is it’s almost always an unsettling, false narrative around how disabled people live, feel and act. I like to go out dancing all night with my friends on an occasion when I’m not having a flare-up (worsening of symptoms) and will feel guilty about it. Not because of the pain I’m in the next day, but because people will question how I can do it with chronic pain. The answer to that is, the pain is always there, but I’m not going to allow my situation to take away my happiness and not partake in my youth when in the near future I could be more restricted with my movement and physical capabilities. Adapting to continuous pain is our superpower and isn’t something to be ashamed of. I want to enjoy my life and make the most of my range of mobility whilst I can.
There are many problems that people with disabilities, hidden or presented, have to live with. But there are many positive and inspiring people to look up to now as it is becoming more of an accepted conversation. I want other disabled people to know that the world isn’t right about you, you aren’t “just getting on with it”. You are smashing it; you are the embodiment of bravery. You will overcome hurdles and live through experiences that take you closer to the person you are meant to be. I know that sometimes these sentiments sound unrealistic and far away from your reality, but remember that besides our restrictions and pain, all of the negative stigmas about us are not true. I hope the future looks like disabled people getting their power back with the help of the kindness of others.
If you are concerned that you’ve been contributing to the problem or aren’t sure how to assist in making the quality of life better for people living with a hidden disability when you’re around them and want to help combat the negative stigmas that we face, follow these three basic steps:
LISTEN: Our voice is sometimes all that we feel we have to defend our disability, so it’s important to listen to the experiences they’re facing and allow them to fully explain their condition if needed, a majority of people don’t know what some disabilities entail and all of the symptoms surrounding it.
UNDERSTAND: It’s all well and good listening, but let’s try to understand better. Ask appropriate questions if necessary and finally, believe them. As obvious as that may sound, some disabilities leave people feeling isolated and as though no one understands them. This was the case for me, but I’m slowly learning that living my truth is much more rewarding than living a lie for other people’s comfortability. No one needs to understand my body, because I do. Understanding my own body and how to address my condition was my first step to acceptance.
RESPECT: The greatest thing that you can do, is value their feelings. This is because, for a lot of disabled people, our mental state affects our condition. Usually making the symptoms worsen. When I cry or get stressed, I develop severe shooting pains in my neck, down to my spine. When an autistic person is triggered by a noise or emotion, their day could be ruined and painful. Visible disabilities can face huge disrespect, many people fail to ask blind or wheelchair users before they touch them or their aid. They may not need your help or feel unsafe. People with disabilities sometimes like their independence and doing things even if it is proving hard or painful to do so. By getting in their personal space or moving them with no prior consent, you’re crossing their boundaries. A scenario of life or death is different. But it’s more common for people to exploit vulnerable people in the name of “helping out” by either sexually assaulting, harassing or stealing from them than it is people saving their lives.
Although the disparities in abuse and intolerance of disabled people compared to non-disabled people is very much still present. I have all the faith that with the changes that are occurring in society, that our futures will look brighter and bolder than ever. Social media has allowed disabled people to have access to others that look or feel like them, whereas before it would’ve been hard to find those who share your experiences. Listening, understanding and respecting disabled people is such an easy but effective stance to take because not only does it reaffirm that we aren’t too ‘different’ and can be involved in normal things as well, but it also raises our confidence and courage to lead with pride, not with fear. I hope that this was a useful insight into how hidden disabilities have a long way to go with awareness but also the overall treatment of all disabled people. We can all collectively make the bumpy ride that disabled bodies live through, a bit smoother.