Updated: Apr 18, 2020
The issue that has divided the country rumbles on and still dominates conversation – I’m not intending to bore you to tears talking about the issues.
I want to talk about all the fears and uncertainty that looms as a dark cloud over many – and just to be clear I’m of the belief that much (if not all) of it is unwarranted fear and a dramatization of the issues. Watching many people panic and fret I began to think about most of these people who are used to having things go their way through life and wondered, are they getting a glimpse into the life of disabled people and families and the difficulties which they never appreciated before?
When disability rocks a household, you enter a world of complete uncertainty when it comes to finances. The outlook on work changes – one or even both parents may not be able to return to work and if you try, finding an understanding and flexible employer can be close to impossible. You enter into a dependency on an income of benefits which can change very quickly depending on the state of the country and its politics and we’ve seen tremendous struggles begin in homes where the disabled person cared for dies and the 15p an hour carers allowance and any other benefits and mobility vehicles all disappear leaving you with few career prospects and far more money out than in.
The fear that we’re all going to starve, or at least be without some of our favourites is often repeated – those that fear should be reminded of how fortunate they are to eat whatever they like however they like. The limits of safe swallows, tube feeds and functioning bowels are far greater than lacking a few choices in cheese – if only they knew.
What if we can’t get doctors or treatment or support from the EU? We have spent 3 years experiencing doctors who’s only interest in Lydia was to write her off – often asking is she worth it or simply saying we’re not going to do certain things to help. Eventually we have managed to get rid of them and we’ve established a team of helpful and dedicated doctors. Many disabled people don’t get the support and treatment they need unless they’re fortunate enough to find the right person to help. Again, this potential worry is a reality for disabled families as health care is far from straightforward and often nightmarish.
If you believe the fear, we may never escape the British rain again – unless you sell your house to buy a week all-inclusive. It takes years of being comfortable with every element of disabled life and an incredible amount of preparation to take a disabled member of the family abroad, that is if you ever manage it. Maybe somebody has cracked it, but the luxury of a yearly holiday abroad is a distant dream for most families with a disabled child – that is if it’s possible at all. Then if you can manage it the cost of insurance and accessible rooms and arrangements are enough to make your eyes water. Travelling is another luxury that has become an expectation for most as people dread the reality of less social media photos of them sunbathing with a cocktail or a beer.
That is just a few examples but perhaps this could give people a bit more appreciation for the life of uncertainty the families dealing with disability live. It’s not easy and you have to be tough but just as with the political landscape, its best to be positive even as we face some uncertainty.