Becoming a wheelchair user is a massive change, a lot of people do not seem to realise that there is a lot more to it than just sitting down in a wheelchair and getting on with your day to day life.
As much as any person who becomes a wheelchair user states that they will be independent and rely on no one, that just isnt possible all the time. As someone who is not only ridiculously stubborn, but also autistic and so finds communication difficult especially with strangers, this is a massive problem for me.
Since a massive autistic burnout a couple of years ago I struggle a lot with the things I struggled with as a child- word finding difficulties and just not being able to connect thoughts to verbal words.
why is this relevent… well, one thing I still have to do weekly or even a couple of times a week is the food shopping.
(I have tried having home deliveries but none of the supermarkets seem to be able to manage getting an order right. Apparently Tesco cant seven substitute water for another ‘brand’ of water! Which, as someone who is tube fed, is pretty much the only thing that comes in the shopping for me. Also, I need to get out of the house, and shopping does that.)
Shopping has lots of parts to it.
I drive, although I really thought my GP was going to contact the DVLA after an incident with my legs shaking while driving, but kept my licence as I got my car adapted so it has hand controls. Actually using the hand controls takes the strain off my leg (I drive an automatic because of my sequencing issues I was having problems with the right order for gear changes at roundabouts for manual. Although, as I didnt have my diagnosis when I was doing my lessons, I told people another truth, that due to a knee condition I have had since childhood, I found the clutch to be too much… both were true reasons to switch to automatic but the idea that I was incapable of doing gear changes properly at roundabouts, would have led to my brother and others laughing at me, although I got to be the one laughing as I passed my auto test first time! Not even my mother passed her auto test first time!). The hand controls are also very simple and easy to use. So I push myself to my car, and, because I live on a public footpath, tend to have an audience as I sit on the boot of my Mini Clubman, fold my wheelchair and put it in the boot and struggle to co-ordinate my legs to walk to the drivers door and get in. I tend to not take my feed bag with me as I need to be able to hang shopping on the back of my wheelchair, so that makes the process a little easier. I drive to the supermarket and here is the first hurdle.
Generally, there are very few spaces available for blue badge holders to begin with.
Occasionally I will find there are no bays left. So I either have to go home, wait, or park in the parent and baby/toddler bays. I can NOT park in a normal bay at all because
a) I can’t get out of the car, I need to have my door fully open to get both legs out and to get myself up out of my chair. Which is why I need wider bay.
b) There is no hatching at the back and I need to be able to open my boot and unfold the wheelchair and put the cushion on.
c) I need the path to go down as cars reversing can not see a wheelchair behind them and I think I have enough problems without adding extra!
That being said, usually I manage to get about half way to 3/4 of the way up the one strip of bays. Here is where it gets interesting. As I pull up, I tend to get people staring at me. I dont normally pay much attention to what is going on outside the car but it is hard not to notice that someone is pretty much stood at the front of the car and isnt moving on. My Blue Badge is always on display as I had a habit of forgetting to put it up. So it is on a non slip mat on my dash- therefore, the person can clearly see I have a blue badge. Here one of two things happen.
- They stare at me, making me severely uncomfortable while I struggle to the boot and then as soon as they see the wheelchair come out they hurry off.
- Before I even have a chance to try and get one foot out of the car door I get abuse. I get told I am too young to park there – which is ridiculous as disability is not an age thing. The elderly are not the only ones with mobility issues! Or I get told that it is a disabled bay- which is obvious as the massive white wheelchair sign is painted on the floor and a blue sign with a white wheelchair logo is directly in front of me, plus I do actually have a blue badge. Generally, I dont have the words to argue, I get angry and flustered and ignore them, which only makes them worse, until I get my wheelchair out and get in it and then they seem to shut up and walk off.
I go down the path to the crossing and of course there are cars with No blue badge being parked in the bays between the shop and where I parked. Which given the abuse or the passive aggressive staring, is very frustrating, as people tend to ignore the fact I have a badge and still have a go!
The supermarkets have wheelchair trolleys.. these are horrible. I had a white wheelchair as my first chair and the wheelchair trolleys scratched the paintwork as the bits that hold the trolley on are plastic. Currently I am using a loan chair, which is a brand new chair which is used as a demo for people thinking of buying that particular chair. So I cant scratch it. I have 3 choices.
- Use a basket and only get essentials
- Try and use a regular trolley – except the trolleys are very hard to control while pushing yourself in a wheelchair.
- Ask if they can have someone push the trolley for me
I usually go for 1. I often get asked why I dont just use the wheelchairs in store. Firstly, I dont want to leave the loan chair. It isnt mine. Secondly, the wheelchairs they have mean you cant turn with the wheelchair trolley on properly because the caster wheels are huge compared to an active chair. The electric scooter things… if there is ever one available, I would feel embarrassed, which is totally a me issue, but they are also loud, and shopping is overloading enough without driving one of those things around.
So, back to shopping, I grab a basket and put it on my lap. I manage most things without help, but certain things I cant use the grabber for are out of my reach and too difficult to try and get up to get them… So I have to try and ask for help. Which not only sucks because I want to be independent, but it also means either trying to find a member of staff or asking another shopper for help. Which means despite being overloaded from the shop, I also now have to try and ask for what I need. So I rehearse in my head what I am going to say, and when it comes to it, it never really comes out right. Supermarket staff, I’ve never had anyone be anything other than super helpful, sometimes bordering on a little patronising. General public, always happy to help. I’ve never had anyone refuse to help.
People do not look where they are going, or worse stop right in front of me. So I either end up getting hit with a trolley, people almost falling over me and then giving me a tut! Or I have to stop suddenly while trying to keep the basket on my lap! People do not seem to understand how mush more difficult it is to have to stop dead and change direction in a wheelchair!
Get to the till. Self service is good, but I stopped using it because the queues are actually longer and the constant noise is just too much, plus I tend to take up more room and so people are always knocking into the chair or worse, move me without warning, nope… so I go to the normal tills. The till makes me feel like a child. I can just about reach to put my stuff on the conveyor belt, around 50% of the time I am asked if I want help by another shopper which is nice. I get to the packing bit and I sometimes struggle due to the height of the packing area. 90% of the time the cashier will ask if I need help packing.
Paying- I tend to use both Sainsburys and Tesco, because my kiddo likes food that you can only get in one or the other. Tesco have their card machines too far away, and they tend to disconnect if they are taken off their holder and that delays the whole thing. Sainsburys have theirs closer so there isnt that issue.
I then put my shopping on my chair and generally on my lap too, and make my way to the car. People do not tend to pay attention or see me as they move away from the till and again, get bashed by trolleys or have people almost sit on me as they fall over. Trying to get out with everyone trying to get in is another stopping and then struggling with change of direction to get through. I then have to balance the shopping on my lap while getting to my car. I put the shopping in the passenger side and put my wheelchair away. I get in my car and leave. Then I have to get the shopping into my house… luckily when we moved over 3 years ago it was on medical grounds due to the kiddo’s autism and ADHD and the flat we were in, wasnt suitable. The only thing they had available was a ground floor flat, which had a ramp, and a wet room. Now those things are absolutely vital and I am glad they were here before I needed them, as fighting to get them would be a nightmare.
The rest of the house isnt adapted. The doorways I can just about get through, and the cupboards are high up and there isnt much room for me to manoeuvre. So despite the pain and the effort of coordinating my legs, I put the shopping away using the crutches.
So shopping has taken on new challenges, that can be hard for some, but have an added layer as an autistic person.