#2: What Does Disabled Look Like?

I struggle in busy places without the correct degree of support in place. Being jostled, bumped, banged into is not ideal for someone fitted with an implant on his spinal cord. It doesn’t do the anxiety demons any favours either. To compound matters further, I also have an issue with my balance. Even now, seven years on from the crash if I lose my footing a little I will still go and to reach out with my right arm and when it doesn’t do anything it is often too late to correct the situation and I fall over.

Visiting unfamiliar places is off the cards now and even familiar places at times feels like preparation on a military scale. Knowing the nearest exit, not too far from the toilets, how far will I have to walk, will it be busy, how busy, too busy? What constitutes too busy?

So, simple easy everyday tasks can become exhausting. They also require support and that falls onto the shoulders of my partner. I need to be accompanied, I need that support, I need to know I am going to be ok. ‘Need’ being the operative word and that also comes with guilt. Feeling guilty that I am a burden, feeling guilty about the lack of independence, feeling guilty that I’m not the person I once was. It isn’t easy and it again puts into context how simple, mundane everyday tasks become grossly complicated for someone living with multiple disabilities.

I am going to relate a story of an event. Unfortunately these types of events are not uncommon. It isn’t about judgement, and it isn’t about eliciting sympathy, it is more about sharing an experience and the thoughts and feelings that are under the veneer.

Pam wasn’t well. She had been struggling for a while with a heavy cold that wasn’t showing any signs of shifting. We needed to get some shopping, and I knew she wasn’t up to being able to support me. Most people would suggest doing an online shop, but is it the cynic in me that thinks most Supermarket chains send out fresh produce that is getting towards the end of its date with their online shops? I’m the annoying one who reaches to the back of the fridges in the fresh food aisle to look for the ones that have just been put out. So, I said to Pam I would go on my own, it was a supermarket local to us, been many times before, just not solo since my life changed so drastically. It wasn’t for much, just enough for a few days until Pam was feeling better and then we can look at doing a big shop. It may sound pathetic, but this is the reality of the situation. I prepped myself as best I could and went for it.

It was busy, really busy. I was struggling big time. The anxiety demon on one shoulder gleefully taking control, the depression demon on the other shoulder reminding me of how pathetic I feel. It wasn’t going great, but I hadn’t given up. I knew I had to keep going as I wanted to at least ‘feel’ like I could get through this. I kept my head down, used a trolley to help as a barrier to help prevent being bumped into, navigated the aisles that were quieter, gathered the essentials as quickly as possible and as safely as possible.

I done it, got to the end and I thought to myself: ‘I’ve done this, not a complete waste of space after all!’ All I needed to do was pay for it and I was done. Except the tills were busy, very busy. Think build up to Christmas busy and you’re in the right ballpark. This wasn’t planned for or expected, but I had done so well up to this point I just needed to keep my head down and get through this tricky final phase.

As I waited in the queue I could feel myself swaying, pulse rate reverberating through my ear drums progressively getting faster. Surely I’m not going to have a meltdown now? I’ve done so well up to this point and I am nearly at the finish line. A problem with anxiety is when you stop and have to wait. It is easy to become consumed in your own thoughts and when that depression demon is sat on your shoulder, those thoughts will predominantely be of a negative nature. However, this time I was determined not to let either of those demons get the better of me, I just need to put my shopping on the conveyor, get it packed, pay and get myself home.

My turn to empty the basket onto the conveyor, I was grateful to be doing something again to distract myself from the intrusive negative thoughts. The person in front of me finished their transaction and set off meaning it was my turn, one step closer to completing my ‘mission’. The Checkout person was very polite and started feeding through my items. It was at this point I realised the anxiety monster was getting the better of me more than I thought. My ‘good’ arm was shaking and this was making packing even more problematic than the normal difficulties of packing with only one arm that works. I was getting there, but it was painfully slow. Knowing how busy the supermarket was wasn’t helping and it appeared the harder I tried, the worse it was getting. I looked up to try and distract myself a little only to make eye contact with the lady in the queue behind me. She looked at me, rolled her eyes and made it abundantly clear she was fed up having to wait even longer than she had to. This done me no favours at all and I could feel myself starting to become consumed by all the demons that haunt me daily. I looked up for the second time in the hope that maybe I could seek some assistance. We made eye contact again and then it happened. The sentence she uttered in distain that will live with me forever:

“You know, if you used both hands, you’d get your packing done in half the time.”

Complete silence for an uncomfortable period of time as I had no words. I could feel myself welling up, feeling a loss of control in my body from anxiety, rage, uselessness, worthlessness, guilt (for some bizarre reason) and dare I say it, hate. I managed to mutter:

‘I only have the use of my left arm.’

To which I could then see the look of fright in her face realising what she had said, but more importantly, the nature of how she said it. Thinking my words might help ease the situation and maybe even an offer of help, but no the reply was:

‘Well you don’t look disabled!’

How am I meant to respond to that? The only words I could muster was:

‘What does a disabled person look like to you?’

The cashier at this point had complete rage in their face by the way I was being treated. The lady who has said these words to me had realised (maybe) where she had taken this interaction and promptly burst into tears.

What followed I don’t really possess the words to describe. Here I am on the verge of a complete meltdown being spoken to in the most disrespectful, condescending, rude and awful manner and I find myself consoling the person who done it. Have you ever felt a mixture of rage and pity at the same time? It was kind of that, but worse.

The thing is, this type of interaction wasn’t the first time and it won’t be the last. Sad, but true. And why did it happen? All because I was taking a bit longer to pack my bags. Surely an offer of help would have been a better course of action? But no, belittling instead.

The cashier very kindly helped me with my packing and I returned to the car and promptly burst into floods of tears. Maybe a part of me was determined for her not to see me like this. I made it, just.