Jenny *This is a collaborative post*
Being disabled is a tricky business. Not only do you have to contend with often permanent, sometimes invisible difficulties, but getting others to actually understand the impact that it has on your life can be a constant struggle.
So, what is ‘disability’? In short, if you have a physical or mental impairment that has a substantial and long-term effect on your ability to engage with and carry out daily activities, then you are likely to be considered disabled. Generally speaking, “substantial” refers to something that is more than minor or trivial – for example, if you take much longer than the average person to complete a general task like getting dressed or leaving the house. “Long-term” generally refers to a condition that affects you for longer than twelve months. Here in the UK, under the Equality Act 2010, certain conditions such as HIV, Multiple Sclerosis and cancer are automatically considered disabilities from the day of diagnosis. This means that there are rules and regulations that are set out to protect you in regards to unfair treatment. Workplaces, for example, are legally bound to ensure that any ‘reasonable adjustments’ are put into place as needed to support your access to work.
Diagnosis
As many will know, half the battle of having your disability taken seriously is the whole process of diagnosis, which can sometimes take years. Chronic conditions that flare up and then recede can be particularly difficult, as symptoms may vary over time, affect different parts of the body and may disappear for a while altogether. My advice? Keep a journal of dates and symptoms so that you can spot any trends or noticeable triggers and for you to take to your healthcare professional. And speak up! A study carried out back in 1999 found that some doctors would allow a patient to speak for only 24 seconds before redirecting them. Be your own advocate! Sometimes, they will be able to diagnose your condition in your first appointment, but often they will need to refer you on to specialists. Once you have been officially diagnosed, you will be able to lay claim to medical and legal help, as well as being able to better understand your condition yourself, which in turn means being able to help others around you to understand your condition too.
Combating Prejudice
In this day and age, we should not have to contend with prejudice because of our medical conditions… but we do. We see stories every day about wheelchair users not being allowed on buses or see misrepresentations of children with Autistic Spectrum Condition in the media as being monosyllabic or savants. I noticed the other year when watching a children’s film that the ‘baddie’ had a visual squint, which ‘magically’ got better when he became good. As a parent whose child has a squint this really, really annoyed and frustrated me.
If you feel that you are experiencing prejudice because of your condition, it is important that you take action to combat this. Not only will taking action hopefully improve your own quality of life, but it will also raise awareness to hopefully help others in the future. If you need support, legal representatives will be able to help you out with a whole host of progressive action, including building a case for you, filing your claim, and ensuring that you receive what you are owed from individuals who have treated you wrongly.
Supporting Others
Do we ever get to grips with our own disability? I think not completely but, in my own case, I have learned how to deal with it better over time. I use my voice as a blogger to help other people going through the same situation as me to see that they are not alone. I am also more confident in calling out disability discrimination and challenging others if needed. Support to others can be in the form of engaging on social media, holding a coffee morning, volunteering on a helpline or just simply listening to and believing others.
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Can you think of any other ways to have people take your disability seriously? Is there anything you would like to say to others or have things happened in the past to make you feel like you were not believed? I would love to hear.
Until next time,
I hate using the disabled loo! but the queue for the ladies loos are often too long. People stare at you- but are disabilities are often hidden. a bit like with my son Josh who is 29 and has autism.
https://laughoryoullcry.com/ – my life as a mum with ms and a son with autism
Very insightful post Jen. Not being believed you have a disability is very hard to get your head around. I feel wary now as to who to tell I have MS, ie new aquantices etc. One very bad experience has made me feel this way and a little untrustworthy! It’s such a shame not everyone is educated or have just a little bit of compassion. X
Such good points, especially where things like diagnosis are concerned and can make things incredibly difficult for patients. Sadly it doesn’t end there, as disability not being taken seriously can affect so many aspects of life afterwards, such as with prejudice in society and day to day living. Brilliant collab post, Jen! x
This was an absolutely brilliant post Jen! You always have an amazing insight on many things and reading your posts gives me a lot of knowledge I may not have know prior to you. Being disabled isn’t easy and society doesn’t help that. I think doctors think they do their job by diagnosing us with whatever ailment we have, but then they fail us moving forward. It really is terrible they only give us 24 seconds before changing the tone. I have started going into appointments with notes and will not allow my doctor to change the conversation until I am done. I think the doctors dread appointments with me, but that is what they get paid for. I really loved and appreciate this post Jen and find you to be an amazing person. I am so thankful that I have been able to get to know you and I hope you are feeling well!!