Disabled isn't a dirty word



There's a lot of talk around at the moment on disability and conditions and how we express these as personality traits within society as a whole, and on a personal preference level. Medically speaking person-centred language has came to the forefront recently, in an effort for doctors to see their patients as people first and their ailments second. There was no wide-spread uproar from our community that I can recall, but the thinking behind this concept is valid and appreciated -When used appropriately. I am an ambulatory wheelchair user, in that I can walk (somedays better than others, some days not at all). I use my wheelchair for bad days, my rollator (type of walker) for medium days, and if I can get away with my cane for short distances like only going into a cafe, I will). Some days I also wear braces, and these vary depending on my prominent injuries or strains at the time. I have Ehlers-Danlos syndrome, untreated hip dysplasia and Chiari malformation, to name just my main conditions. Every day is different for me and my body. I went from being a child in pain, to a teen in pain, noticing I couldn't do many physical things others could my age. Feeling clumsier than my peers, realising my movements were clunkier and my fatigue above average. Without a full diagnosis this all meant nothing to me. The decline of my health in my 20's eventually lead to my various diagnosis and the realisation that I was disabled. It wasn't a badge I wore easily at first. I had always appreciated differences in others and strive to embrace the complexity of what makes people them. Life would be boring if we were all the same, with the same capabilities and path. But it's another practice entirely to view yourself as something that traditionally society has a negative continuation with. There are so many misunderstandings around the ideas of disability, as if ability isn't a fluid, transient notion -like we all somehow stay in a state of being on one end of the scale or another, our whole lives. This simply isn't the case, if it was then we would not have structures in place to take care our elderly. But I'm in no way against labels. They're important, to society yes, but more so they are important to the being. Coming to terms with the facts that I can't work, and may not be able to do this or that, has been easier with a sense of self and the communities that nest together our own unique language - Spoonie, spoons, zebra, flare, and for many that includes disabled/ disability and even cripple/ crip. There has been an awakening of not only seeing our terminology as a positive identity badge, but also taking back words that previously have been used to degrade us. So when can you use person-centred language, and when should you consider using the term before the person? In the professional/ medical side it's best to follow the lead of how you were instructed, your place of work will have their own policies and using person-centred language in this space is often expected and rarely judged. The issue only arises outside of that zone when someone insists how another individual should be addressed. It's important to realise that not every diagnosis is an ailment, a condition that is completely separate from the person, and something that is inherently wrong with them that needs to be fixed. One of the best examples for this is those on the Autism spectrum. The only ways to know is to ask the person in question, or watch out for cues on how they address themselves and others in their community. But for the most part we are kind of sick of people telling us how we should label ourselves, and this is nothing new. I fought with myself for years, going back and forth oh how to deal with it all. Coming to terms with being disabled wasn't easy, you aren't given an instruction manual. The diagnosis process was a long hard battle, I faced brick wall after brick wall, I had nurses and doctors sympathise and even cry for me, as frustrated as I was. One "I'm sorry I can't diagnose you -I'm not qualified in Hypermobility conditions" turned into ten. Money was fundraised, coping mechanisms were formed, online communities became my norm, my husband became my official carer. I worried increasingly what people would think of me, that I was faking. Fake was a label that hung above my head threatening every ounce of my existence. Eventually I officially received recognition for all my hard work in the form of diagnosis. After everything, that is something no one can take away. So I grab all my labels now with as much positivity as I can and I hang on to them like precious gifts. On my best days I wear my disability badge with pride -I am a disabled person, and that's ok. On my worst days it's a cloud around my heart -I am a disabled person and it sucks at times. It's ok to feel both. My body might look different to the public and work in varying levels from one day to the next, but I don't stop being who I am - Labels included.