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The realities of living with disability

Recently, a number of prominent disability charities reported an increase in public abuse towards disabled people and their families. The reports partially blamed the recent governmental focus on benefit fraud and overclaiming for causing an increase in resentment and suspicion towards disabled people.

Now, whilst I completely understand the economic imperatives to reduce the welfare bill and to weed out the inevitable minority who abuse the system, the fact of the matter is that unless you have a close family member or friend who is disabled you are unlikely to really understand the reality of what life is really like.

My four year old son, Arun, and the life he leads is a case in point. Everyone notices the obvious things like the problems that Arun has walking and the fact that he goes to a special school. However, the cynics would protest- he does walk and he does talk, so how disabled can he be?

Well, little Arun can walk but after about 50 yards he gets tired, starts to find it painful and then demands to be carried. It is not only this, but Arun has no awareness of danger and thinks nothing of stepping straight off the pavement into the road. If he falls over, which he does a lot being so unsteady on his feet, he finds it difficult to stand up again unaided and so has to crawl to the nearest tree, lamppost or wall before he can get up again.

That is just the obvious stuff. There is lots more that is hidden to the casual observer. Arun cannot chew food which means he has a special diet which we have to prepare for him at home – this costs money and time. He has problems with reflux, which to me and you simply means that he throws up a lot. This causes him pain and discomfort as well as meaning we have a lot of cleaning up to do.

We are completely dependent on the car because Arun cannot tolerate large crowds of people or the unfamiliarity of buses or trains. We are also in the car a lot because Arun’s special school is not in the local area but is 6 miles away. He needs dropping off and picking up and this makes for a 40 minute and 12 mile round trip twice a day for every day he is there. Arun also has many medical appointments in London (at least one or two a month) which equates to another 100 mile round trip. Add to this that we have to run a bigger car than most families given the huge amount of specialist equipment he has and you can see how the price of diesel soon adds up.

 Finally, there is the impact on those around him. Arun has been ill as a result of his disability for 38 days in the last six months (we keep a diary). This excludes the two weeks he was off with chicken pox (we don’t count the regular toddler ailments). This means that he cannot go to school and needs constant supervision and attention on these days. Add onto this the 21 medical appointments he has had in the last six months and this totals 59 days – there are not many employers who would give a parent 59 days off every 6 months to look after their child which explains why there is not a single family of a disabled child that I know where both parents work. Indeed, the stresses of raising a disabled child are such that the divorce and separation rate between parents of disabled children is significantly higher than the norm.

So, the next time you hear someone ranting about the disabled living off their taxes please remind them that it is rarely that simple. You might want to remind them that many disabled people and their families are taxpayers too.

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