After my last, loving and caring post, a completely different theme this week…..
I was scrolling through my emails and tweets the other day and came across the notification of a podcast on BBC Ouch. Now I have listened to these podcasts before and they are often a very funny take on the disabled world, short podcasts on embarrassing things that have happened to disabled people and also items to provoke conversation and highlight issues that had been raised by the media.
But this week, the title really caught my eye. It was called “Is having a disabled partner a burden?” This jolted right through me as I often feel that since my disability, I have felt a burden on my now husband, the ever loyal P.
Am I really a burden? And why does the BBC consider the word “burden” to be appropriate whilst talking about a disabled partner?
This has really bothered me. The word ‘burden‘ is not a nice one; its official meaning is something that is too heavy to carry, something that causes a lot of worry, difficulty or hard work and is a problem. I was never a burden in my ‘previous life‘. I was a strong, professional woman who held a managerial position. When and why did I become a burden?
I got very angry; I couldn’t believe that an organisation such as the BBC would see me in such a way, why did I have to prove my worth in society, what if the words ‘Black’, ‘Asian’, or ‘Muslim’ had been used instead? Would that be acceptable?
After calming down, I thought the best way to work out what the podcast was trying to say was to actually listen to it. It comprised of three women who had disabled partners discussing how they met their partners and the experiences they had had since their relationships began. It was actually much less critical than I’d imagined; it wasn’t so much focusing on the word ‘burden‘, as how they cope together with the issues and challenges of being in a relationship with a disabled person.
They felt themselves that the word ‘burden’ was an incorrect one. They saw their relationships as ‘normal’ albeit with slight readjustments needed but that 99% of the time it wasn’t a problem, that the disability was their mutual identity and they had a real feeling of solidarity through it.
They discussed a wide reaching range of topics. They started by answering questions and discussing the way disability is seen in the media, especially did the film “Me before You” show without doubt that being in a wheelchair means that life is not worth living because – #SpoilerAlert…… (he commits suicide at the end as he cannot come to terms with a disabled future.) They discussed their roles within the relationship, the attitudes of others towards them, the familiar ‘does he need help?’ ‘what does he want?’ and my personal favourite (which I had this weekend!) ‘is she staying in her chair?’ (to which I replied “yes, SHE f#@king is!“) #SorrySis!
When they started talking about their roles within the relationship, my ears pricked up. This was what I was waiting for – how does the able bodied partner see their role? As partner? As carer? As what? They had many different answers; some were more involved with care than the others, one was a partner with a PA assisting her husband and one was the full time carer. But not one of them considered their partner a ‘burden’, if anything they felt that the heightened bond and the increased communication between them was an advantage – one of them said ” I’m really glad I’m his primary carer, I get a lot of joy from it”
So where did that leave me? The word ‘burden’ in the title still annoyed me, am I a burden? Has becoming disabled ‘mid-relationship’ shifted the balance between P and I? I plucked up the courage, took a deep breath and asked him……
His reply was that from his perspective, whilst things such as a quick sneaky weekend away are now not accessible, our relationship hadn’t really changed. We spend all our time together now which in his opinion was a plus and the fact that he now has to help with my personal care wasn’t an issue. He gets more annoyed by the fact that the world outside is so inaccessible to us now and that so many plans have to be made in advance than helping to dress me!
He did say however, that he does miss our walks, our time together outside holding hands and how wandering down country roads these days is terrifying – wheelchairs, country lanes and idiot drivers make for a very scary afternoon out! I miss that too, the sheer act of walking arm in arm is something that you don’t realise you’ll miss when you can’t do it anymore.
Overall, after listening to the podcast, I was pleased to hear that it wasn’t one of condemnation at all, it was a very interesting and uplifting listen but still the title annoyed me, and looking on Twitter, it annoyed a lot of others too.
A day later I noticed that the heading had been changed to “How I met my disabled partner” and again today to “Having a disabled partner is no burden” – how very interesting, perhaps the BBC does listen to its licence payers and the ‘Twitter Army’ after all……??