Have you ever been stuck in an elevator, lost in the bush, or broken down in your car on the highway. I know I have and it is cause for stress and panic when you find yourself faced with a situation you may not have experienced before. When you really look at those examples you can see just how dangerous or frightening being out of your depth can be. Many of us however, have only one person to consider, ourselves, and making decisions, climbing over obstacles, running from danger, or waving down help, are all ways we can solve some of the situations we may find ourselves in from time to time.
Imagine then how someone caring for another, and faced with the same circumstances as those above, would react when their options are curtailed by their need to think for two. Perhaps you have a toddler in tow, or a slower moving parent. Imagine if someone you care for cannot be walked to safety because they are confined to an electric wheelchair. In such cases the caregiver needs to be even more aware of their emotions than they may otherwise have needed. The very way carers handle such dilemmas will determine the ability of those in their care to cope with situations when a carer may not be in attendance.
As the mum of a son confined to an electric wheelchair I am well aware that finding ourselves in unfamiliar circumstances where we are in trouble in one way or another, is not an isolated situation. It is something I have had to be prepared for as much as possible. There are a few ways to do this, but you must also be aware that you can’t possibly foresee all issues that may arise. What you can do however, is learn how to handle those issues in a positive way.
The simplest strategies to keep in mind, could be considered just common sense, like having the number of the taxi service in your phone should you require it. Often though, and I have done it, the taxi number is written on my spreadsheet which is attached to an app in the phone. A sudden unexpected event has occurred, and I have found I couldn’t access the app I had attached the spreadsheet to. Not because it wasn’t there, but because my brain was consumed with too many thoughts. Other problems took up that thinking space and I found myself at a loss.
It is best to put the phone numbers included on your spreadsheet, business card, or diary, directly into the contacts in your phone. Also make sure to add it to the contacts in the phone of the person you care for too. Should they be out with a carer other than yourself, they will have a duplicate of all relevant phone numbers, medical contacts, etc, in an easy to find space on their phone. Even if the person you care for is unable to speak for themselves, another person will be able to access the information required in an emergency.
If you care for someone in an electric wheelchair, whether child, parent or spouse, a cost effective way of having some confidence when you go into the city or any distance from home, is to have insurance through a motor vehicle emergency services company. Just as they come out to fix a flat tyre if you are on the freeway, or a flat battery when you can’t start your car, most cover electric wheelchair problems such as flat tyres when you are out and about. My son has had cause to call them on several occasions.
I know you are probably thinking it won’t be much use if they don’t carry the right tyre for his machine, and that has certainly happened once or twice. But the very fact they come out to his aid is the real bonus. If they cannot fix the problem they will call a taxi and see the person is delivered to their destination safe and sound. That is what I am paying for when I take out this insurance. The main thing is to negate any fear the person stranded in an unfamiliar area may otherwise feel.
Perhaps you wonder why he wouldn’t just call the taxi and be done with it. Here again we have had issues where a disability taxi just wasn’t close by. He may not have wanted to go home at that time and just needed his tyre re-inflated, or the problem with the chair may have meant it couldn’t be moved. Better to have phone numbers for two service providers, rather than one. It helps to alleviate some concerns for my son to know he has options.
Another important tool for carers is a search engine on your phone. When you are going somewhere new, google maps can be a life saver. Just search disabled toilets, wheelchair pathways, disability friendly bus and tram stops, and any other information you may require. You will most definitely still find yourself in less than optimal situations at times. That is just life. The best we can do is use all the tools at our disposal to help us along the way. Below I look back at a memorable problem we had to negotiate, which is testament to the fact you just never know what you will be faced with . You can choose to be upset when things go wrong, or you choose to just find a way.
When my son was in primary school I had cause to take him on a school excursion. We were to visit a Government building in the city. I just assumed being a Government building it would be wheelchair friendly, so I was totally taken aback when told the toilet was on the first floor. The downstairs toilet had been altered to become a storage room. My shock must have been visible but there was no point arguing. My son was desperate for a wee. In the end I had to take him outside, behind a bush, and hope we had enough privacy.
I really was angry, but the staff in the building were not to blame so it wasn’t going to solve any problems upsetting them, and in turn upsetting my son. After returning home I wrote a piece for our local paper about our experience, how we felt, and how if people were aware of such issues they could help disabled people by reporting what they felt needed attention to their local council or building management. It was interesting to note the people who contacted me saying they had done just that.
This is the very kind of situation where we as carers have a certain responsibility. I know it is easy to say we and our charge have rights, and so we do, but those uneducated in the ways of disability cannot be expected to fare well if we get angry and upset about issues they may never have considered. It isn’t their fault a building may not cater to our needs, as in most cases they are a tenant. Instead it would be more positive to enlist their help in seeing changes are made. Working together to solve problems doesn’t just educate the uninitiated, it builds resilience by example for the one we care for. They learn how to deal in a positive way with people who don’t understand their needs. They become a catalyst for change by the very way they relate to the people around them.
I thought I had seen most access issues relating to buildings disappear into the past, especially with the focus on inclusion and disability access evident in all communities in present times. But there is always an exception, and recently my son was caught unexpectedly in what could have been a very dangerous situation. It brought up quite clearly, the two different ways the fallout could be handled.
Rob and his carer took a taxi trip to see a movie in a cinema in a neighboring city. It wasn’t a small complex, so there was no reason to believe access would be a problem. They took the lift down to the cinema, which had a kind of sunken entrance. After watching the movie they went back to the lift which had unfortunately broken down in the meantime. Staff and security officers checked all other exits and fire doors to find every entrance was bordered by steep steps. If a fire had broken out it would have been a dire situation indeed.
The maintenance people were called and it would be many hours before the lift was fixed. In the meantime the staff showered Rob and his carer with food, drinks, and another movie, all free of charge. Rob’s carer was pretty upset knowing how bad the situation could have been. Luckily she didn’t have another client to visit that day or it would have been a real concern to others as well. Rob took it all in his stride and enjoyed the ice-creams and drinks, and thankfully the second movie they saw was really entertaining. This episode does bring up a few points worth discussing.
Firstly a stressed carer, may have been compelled to angrily complain about the lack of safety and access. If a heated discussion had taken place my son Rob could have become distressed thinking it was his disability and wheelchair causing the issues. Realistically it was the lack of planning in the building. But to a young person stranded away from home, confidence can be easily sapped. Fortunately Robs carer remained calm and positive. Rob was able to learn a lesson in diplomacy which would hopefully enable him to help himself and others to overcome similar situations moving forward. It goes without saying I could have also been upset if Rob had come home distressed. Gladly a more positive approach was taken.
The staff and the security guards had not previously been put in the position of needing to help someone leave the building through an alternate exit before. It was only when they started opening doors did they find there was no way out. When confronted with the problem the staff could see what needed to be done. They didn’t need Rob or his carer arguing their rights. Because the staff were doing all they could, and because that help was seen to be appreciated, the staff are far more likely to back our requests to lobby for a remedy. We are all on the same page. I feel confident management will be sternly informing the owners of the building there are problems that urgently need to be addressed.
Unfortunately things like this happen from time to time. As a caregiver we are the ones who must be willing to educate the majority of people who are unaware of the obstacles we may face. It is no good expecting everyone to understand our needs. Because a child with a disability will most likely live with that disability for life, as a parent it is wise to give them the understanding that you get much further if you educate and work with others, rather than blame, demand, or get angry. Again, I know we have rights, but getting what you deserve often comes down to how you communicate with those you require consideration from. I hear it when some say “Why should we ask for what others expect as a given? And why should we be so willing to thank others for what most take for granted?” I can answer that easily.
Solving the small problems when they come up, in a conciliatory way, allows trust to grow, respect to be fostered, and builds a willingness to work together to solve the bigger problems. It has worked for me over many years, and because Rob has seen that example over and over, he is far more resilient when he has to make decisions, than he may otherwise have been. When we come up against sub optimal situations and find ways to improve them, I believe we also have an obligation to make that known to others who might follow. I hope these few small tips will be added to your tool box of strategies for negotiating the many obstacles the future will surely hold for you.