In order to elaborate on my home knitted theory on HAR, I have decided to break up the emotional stress into single components. This first post will be on Humiliation. The work through will be in random order and is as such not listing the most important factor first or last. In any way it might be very different from family to family which component matters most to them.
I think most people have experienced humiliation at some point in their life. Some might run into it quite frequently. The humiliation faced by a special needs child, sibling or parent is a little different.
Humiliation by the public system
The majority of special needs families are dependant on some sort of outside help. Unless you have an endless source of money, you very quickly become aware of the fact that you cannot make it without help. Some families are completely reliant on public or charitable aid.
Sometimes the ones needing outside help the most are also the ones who can most easily feel humiliated, at other times they may feel less so. A common factor for the weight of the humiliation is whether the family identifies themselves with the ability to be independent, to handle their own problems. Another whether the family is strong and relatively harmonious.
However all families dependent on public/charitable help can be swayed one way or the other by one common factor: How are you treated by the office/organisation that is meant to help you?
As in all areas of human relations the best results come from empathy and genuine enthusiasm for the job you perform. In working with the special needs family those two qualifications are imperative to reducing the humiliation of the parents.
Empathy in this case should not be difficult to muster.
After all it is very rare to find people who actually wish for a life full of so much worry and so many obstacles as you have when raising a special needs child. Furthermore it is a life that can befall us all. Most parents expect to foster a healthy child with a normal life ahead of them. Very few can imagine that genetic errors, medical errors, illness or accidents will change their hopes for the future. Since it is easy to relate to the innocence of the families and the fact that your life can change by the stroke of a key, empathy should come flowing like a melting flood in spring.
I can however assure you it does not. In most cases the families are lucky to receive a little pity. But in almost all cases there is a strong underlying sense of disapproval, guilt placement and distrust. And these are the foremost contributors to installing humiliation in the special needs parents (and thus the child and siblings).
I have yet to meet a family with a handicapped child that does not wish their child had been healthy. It is not a question of love, creation or whether all beings have a right to be. It is simple logic. We all wish for the best, easiest and happiest life for our children. No aspect of the special need life is best or easy and happy is dependent on both diagnosis, family, health etc. As such I think I can say without presuming too much that, apart from the usual suspects in all aspects of life, no special needs parent wishes to exaggerate, lie or cheat to make their life appear harder or different from what it is.
So to be met with distrust when asking for help is extremely humiliating. The humiliation is then further enhanced by the fact that most families go for so long without help, trying to keep their daily life on track that when they really do ask for help, they are often at the end of their tether or beyond. Most have already spent all their savings, borrowed to their limit and pulled on all possible goodwill from their workplace. They have racked their brain for any possible solution other than asking for help. The distrust they meet is uncalled for and harsh.
Disapproval is another great factor in causing humiliation.
When parents have struggled to be enough and do enough for their special needs family only to be met by a “know-it-all” systems of more or less educated professionals, who will take any opportunity to correct the parents knowledge of their child and second guess their choices for the family, the humiliation is greatly enhanced. Often the parents are already worried that they may not do enough or do the right thing for their special needs child and they need support and reassurance if anything, not disapproval.
Any other parent who is not dependent on public help will never be questioned as to why or what they do when raising their children as long as they are not abused or mistreated in any way. So to be forced to succumb to that kind of disapproval (essentially the same as questioning) is the same as being forced into a category of unfit parents who cannot take care of their children. Not only are they forced into the category, they are so without rights, without any law on their side. Simply by stigma and not so qualified or overly stressed social workers.
As for guilt placement it almost explains itself. Although you may not think it possible, there is a lot of comments in the public governance of this area such as “you chose to have a child”, ” you chose to drive on the highway”, ” you chose to have the vaccine”. While it may make the public worker feel better about him or herself, it delivers excruciating guilt to the parents who are sure to have had those terrible thoughts themselves and not needing them reinforced at the place they come for help.
All in all, it is a lot easier to humiliate than not, but while it may give instant relief to the public representative and reduce the discomfort of facing so much hardship, it will very quickly strain the working relationship between the parents and the public office and not benefit any parties, least of all the child/children involved.