Living with Disabilities: Beyond a Curved Spine Interview
Beyond a curved Spine are Abimbola and Abby whose mission is to raise scoliosis awareness, one city at a time by promoting early detection, thereby eliminating complications and reducing the need for surgery. They also provide treatment support, training and counselling. Upon diagnosis, they seek to create a community of love and strength for scoliosis warriors.
Here’s an interview they did with us about the work they do and the importance of physiotherapy treatment in scoliosis management.
1. Please tell us a bit about why you started beyond a curved spine?
…Some 15 years ago in 2004, my sister noticed “my back wasn’t looking normal”. It was slanted and it showed in the way I walked. At first, she thought it was as a result of bad posture (at the time, it was called “doing swagger”).
So everyone thought I was “doing swagger” when it was simply all shades of scoliosis-symptoms. Few months down the line and… my back was looking like a “letter S”. It was obviously more than a bad posture. I had just returned from boarding school, for the Easter holidays. I’ll never forget. My mum took me to the hospital and it was the first time in our lives any of us will ever get to hear of the word – SCOLIOSIS.
Fast forward to two years after I was diagnosed, still in boarding house. I noticed a school mate’s back was “looking funny” while in the bathroom. I alerted her immediately and because of this, her parents were able to immediately seek information and help which resulted in a significant control in curve growth.
In 2016, this schoolmate of mine (Abby) and I decided to begin to raise scoliosis awareness. Borne out of the sole motivation that by early detection, children living with Scoliosis can immediately get help. We are also building a community of love and strength for ScoliWarriors. No one should walk this journey alone.
2. How pertinent is the need for disability support groups in Nigeria?
That’s a critical-emergency-need (If there’s such a word)! It’s on level red. One of the huge gaps in the Nigerian disability space is the lack of psychological care. It’s often forgotten that “the mind game” is one of the biggest struggles for differently-abled people. Unfortunately, our healthcare systems don’t cover for these gaps. And that’s why we urgently need support groups!
3. What is the reality of living with a disability in Nigeria?
First, there’s the cultural stereotypes. You aren’t normal. You’re an outcast. It’s a spiritual problem/curse. A typical example will be one of our scoliwarriors diagnosed with scoliosis in her early teens. Her parents didn’t think it was normal – they thought it was a spiritual attack of some sort. Thanks to this belief, the teenager was taken to a Baba (healer) who used blade to make incisions all over her back, because, “scoliosis was as a result of accumulated bad blood in her back and by draining the blood, her back would become normal.” Of course, it didn’t work! The process only left her scarred for life.
Then, there’s the societal struggles. There are hardly any disability-friendly facilities in Nigeria. From transportation systems to schools, houses, hotels, banks, etc. you hardly find any facilities that make disabled persons’ lives easier. To get on a bus, for example, as a wheelchair warrior, you literally have to be carried on-to the bus (and that’s only feasible for BRT buses). Getting on a danfo (the regular yellow buses) is another story entirely. I hear that some organisations also discriminate against employing differently abled people.
I should also mention the “nobody wants to marry someone who’s not normal” bit. There’s that silent, underlying belief that a differently abled person might not be attractive enough to the opposite sex. Of course, its utter rubbish!
Overall, it’s crazy being a “not normal” person in Nigeria, but we are stronger than crazy! 😀
4. Please describe the challenges you face on a daily basis.
As a scoliosis warrior, I must confess I don’t really face everyday challenges people living with disabilities (e.g. wheelchair warriors, cerebral palsy warriors, etc.) might face.
A typical difficult day for me will be a day of discomfort! There are days when I feel really uncomfortable in my skin – days when my back really hurts or I just feel like my back is stiff and tired. Other challenges could be… looking for what to wear! Haha… sounds petty but it’s real! There are days I just want to put on a vest and go about my business – and I do! There are other days when I’m simply not in the mood for stares and “what’s wrong with her back’’s so it takes me 500 years to pick an outfit. It sucks and it can be devastating like – why can’t I just wear whatever?!! LoL! Real struggles.
5. Have you tried physiotherapy before and how did it help?
I haven’t actively tried physiotherapy to be honest. And that’s because as at the time I was diagnosed, I didn’t find any “working” physiotherapy centre. I was referred to the physio centres at the Military Hospital, Yaba and National Hopsital Igbobi but both lacked adequate equipment for scoliosis care. So I gave up.
I’ve tried intense scoliosis-specific fitness routines though, and I did feel better! My core and back felt stronger and better. I still look forward to trying out the famous Schroth therapy I’ve read so much about (or some intense physical therapy procedure for my back). I believe physical therapy works!
6. How do you think people living with disabilities can benefit from the PCA Independence Store and the equipment we provide?
Coincidentally, a scoliosis warrior recently messaged me, enquiring on where they could get a lumbar roller and I directed them to the PCA independence store! That’s how people benefit from your Independence store! It’s good to have a reliable store to get stuff from; I think people just need to be aware there’s a one-stop shop around for all your “ortho-gadgets” and of course, organisations like BACS are happy to share the gospel, as necessary.
Personally, I think PCA is doing physio right and thank you for that!
In terms of benefitting from the equipment you provide in-house, here’s what I think: I’ve realised that everyone wants to do physio but they’re usually put off because– physiotherapy is expensive! (a somewhat true myth if you ask me). I’m honestly not sure if this is what you’re asking me by the way, but…
In terms of getting more differently abled people to benefit from all your “ortho-goodness”, I think PCA can look into organising combined programmes/classes for people with similar conditions (like a gym of some sort). That way, more people might be able to afford physio sessions and while they obviously may not get the best results possible, they will be better off.