Diagnosed with spinal disc herniations, osteoarthritis, and joint hypermobility syndrome in 2011, The Kite Factory’s search director Niki Grant considers herself to be a ‘differently-abled’ individual. Here, she shares some of her daily challenges in the hope of spreading empathy and consideration.
After two weeks of watching fantastic Paralympians on screen, and marvelling at the athletes’ strength, ability, and resulting fame, it’s important to consider not only the challenges faced by those who have made it to sporting stardom.
What about the everyday challenges faced by differently-abled individuals the world over? Sometimes candid information can be difficult to come by, as it’s often relayed by charities, spokespeople, or journalists, and often these pieces can feel sensationalist or contrived for coverage.
I’d like to give you an insight into my life as a differently-abled individual, and share some of the challenges I face, and how you can support others in small, but meaningful ways.
My name is Niki. I’m 30 years of age, and in 2011 was diagnosed with two lumber disc bulges and joint hypermobility syndrome, as well as suspected spinal osteoarthritis.
Medically, this means that two of the discs in my spine have weaknesses in the side of them. When I stand, sit, or move in certain ways, those two discs bulge out like a squeezed water balloon, causing them to protrude into my spinal column, which houses the all-important spinal nerve.
Joint hypermobility syndrome is what you may know as being ‘double jointed’.
Essentially my muscles are like old elastic bands: a little loose and baggy, which means they don’t snap back as they should. Osteoarthritis is the wearing down of cartilage in the joints, causing stiffness and limited range of motion.
So what does this mean for me day to day?
First and foremost, I am in pain literally 100% of the time.
This can range from a low-level ache (similar to when you feel you’ve ‘slept funny’), to pain that takes my breath away when carrying out simple tasks such as…well…existing.
Sitting, standing, moving, staying still; during what is commonly referred to as a ‘flare up’, there is no way to ease the pain aside from making myself more comfortable with ice packs, heat patches and the odd painkiller.
Stronger painkillers are often very addictive, so even these should be used sparingly.
As you may guess, I will not be procreating, as carrying a pregnancy to term risks damaging my spinal nerve, which could cause paralysis.
Secondly, my stability is often compromised.
When walking during a flare up, I can feel my knees and hips slip out and back in again, due to my baggy muscles failing to keep my joints together as they should.
Standing still (such as in a queue) is doubly painful, as my discs press on my spinal nerve all the while my knees struggle to stay in place. I often use a walking stick, and on the odd occasion have required the use of a wheelchair in order to attend conferences.
The final tangible impact of my conditions is fatigue.
My body has to work overtime to keep me stable as my muscles aren’t cooperating, and I’m having to constantly mentally assess situations, possible approaches, and compromises. This leads to physical and mental exhaustion from doing something as simple as leaving my house and getting into my car.
It’s worth noting that having a ‘disability’ is a bit of a grey area.
An allergy is ‘officially’ considered to be a ‘disability’, however it really depends on the individual as to whether they define their condition in such a way.
I consider myself to be ‘differently abled’. Some days I can walk, dance, even run like most others can however during flare-ups, my self-sufficiency plummets.
I’m not eligible for a blue parking badge (I can’t tell you why – I applied and got turned down with no explanation) and receive no financial benefits as I continue to work full-time, so in the absence of any official paperwork it’s really down to me how I decide to define my conditions.
It’s fascinating and appalling in equal measure to see the difference in how people react to me when I’m experiencing a flare-up versus when my symptoms are manageable.
Here are some things that can make the difference between a great day, and an awful day. I urge you to bear these in mind as you navigate your own life, as tiny gestures can make a huge difference.
Unless an individual’s condition includes visual impairment, they can see you staring.
During flare-ups in my younger years, public transport meant suffering the open curiosity of others wondering why someone so young with no visibly apparent injuries would need a walking stick.
If you’re that desperate to know then ask, but don’t be offended if I don’t want to discuss such personal matters with a complete stranger.
If a child is staring, I always make a point of smiling at them to help dispel stereotypes of walking sticks meaning angry elderly neighbours, or some kind of witch(!).
If you are with a child who is curious, please do not shush them – politely ask me to explain what’s going on to the child. I’m quite happy to explain – “Oh this? This just helps me to walk when my legs are tired, or I’m a bit achey!”.
Do not allow your own bias or discomfort to impact a child’s impression on others.
Lend a hand
I don’t mean helping me down a step so you can make a fanfare about how altruistic you are on TikTok. I’m talking about small, quiet gestures such as holding a lift door if you see me approaching, to make sure I don’t miss the lift.
Missing a lift means excruciating minutes of standing still waiting for the next one so this small act of kindness can help to keep my pain levels manageable.
If someone is behind you in a queue and they are using a mobility aid, ask if they’d like to move ahead of you in the queue to lessen their waiting time.
Better still, take charge of the situation and ask others in the queue if that individual can be served next. Whenever I have advocated for others in this way, I have never met any resistance from any of the other customers.
Leave accessible toilets and lifts available
You may not think that sneakily catching a lift in a tube station makes a difference to anyone, but whilst you ascend towards the heavens, I’ll be in agony, standing downstairs waiting for the lift to return so I can avoid multiple flights of stairs and the crowds of commuters who are often too focussed on their own journeys to notice others needing more space or time.
Likewise, I know accessible toilets are larger, less used and so often cleaner than other public toilets, however there is usually only one available.
Accessible toilets aren’t just bigger to accommodate wheelchairs – they include a sink for any necessary personal hygiene matters and include bars to assist in the user standing and sitting. They also include an emergency cord, so more vulnerable users can request assistance if they were to fall, or struggle in any other way.
You are not an expert
If an individual has trusted you with information about their condition(s), do not say any of the following things unless asked for input or advice:
“Oh yeah, I’m a bit like that sometimes”. No you’re not, unless you have a similar diagnosed condition.
“Oh, have you tried yoga?”. Nah, just thought I’d live in agony and never try to solve it.
“Oh that’s so awful, I’m so sorry.” Well…this is my life so I’d rather you didn’t pity me for how ‘awful’ it is!
I personally have spent years adapting to my physical idiosyncrasies; trust me, I know what I’m working with.
Here are some of the gestures I’ve experienced that I’ve appreciated more than words can say:
- A shop assistant quietly inviting me to a different till to get served more efficiently. This was in the Epsom branch of TKMaxx – bravo for your fantastic staff!
- A stranger taking the gamble of shoving my wheelchair through the train doors when my front wheel got stuck as I disembarked while the doors were closing. (Never touch a person’s wheelchair without permission, but this was an emergency!)
- An individual at a conference seeing me struggling with crowds, who when proceeded to walk in front of me yelling ‘BEEP BEEP BEEP’ like a reversing lorry to clear a path. (Some may consider this offensive, but he asked my permission, and it was very effective and also hilarious)
The moral of the story is thus:
Life is hard for everyone. It can be even more difficult for those with medical conditions that impede mobility, communication or any other common activity.
Try to be aware of your surroundings and if you see someone who you think may be struggling, treat them like you would anyone else, and simply say, “Excuse me, is there any way I can help?”.
When I’m in pain, exhausted, and frustrated , a little kindness goes a very long way.
If you’d like further information, Leonard Cheshire is a fantastic source of support and advice.