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June 27, 2015

I’ve been involved in a couple of debates this week about how the parents of learning disabled people can often oppress them. Of course it happens but I get frustrated sometimes that in amongst the well meant call for independence, there is often a skewed understanding of family life. Sara Ryan coined a brilliant description of this – “prolonged parental intensity”. The parent is long involved in day to day involvement that simply wouldn’t happen in a neuro typical family.

This week a client was talking about her void now that her youngest daughter has flown the nest. Later, I thought about our situation. Steven is the tenant of the home we live in, so if anyone will be flying the nest, it would be me. But if it was the other way round, the alternative nest options for Steven are pretty grim. The nests available to him are nowhere near as wide or attractive as those open to my client’s daughter. When people fly the nest it is usually with an aim of expansion. Sadly, for lots of learning disabled people it is marked by contraction and loss.

So family life continues and I wish sometimes the realities of that would be recognised more and judged less. Decisions are made including the whole family and there are winners and losers each time. Here are a couple from the past week. There are probably several ways they could have been handled but that’s not the point.

On Mondays, Steven goes to the Arts Centre. The usual plan is that I go off early to buy the snacks and open up the Centre and Steven & his two support workers set off about 9.30. Once they arrive, I head off back home to do the hoovering. This week, I was at the Centre awaiting their arrival and at 9.15, the second support worker phoned me to say he was stuck on a train and it would be at least 10am before he arrived. He assumed that everything would just be put back an hour. There were two problems with that. Firstly, the room is only booked until 11.45 and then other people use it. Secondly, expecting to be at home, I’d booked a telephone assessment with a new client at 10.45. I’d now be doing a potentially emotional interview for the client slap bang when Steven & the staff arrive. So, do I meet my needs and cancel Steven’s trip out or do I meet Steven’s needs and cancel the assessment and try and find another room for Steven’s session. In this instance, I chose the former and Steven lost out.

Two days later, a similar thing happened. We needed someone at home to let the housing manager in for her 3 monthly inspection. Does Steven have to forego his gym session or do I cancel two hours at work? Although, cancelling the work could be seen as unprofessional and letting the clients down, and it cost me £60, that is what I chose to do and Steven got his gym session.

The point of these stories are that they are daily occurances and will continue to be because of the prolonged parental intensity. Decisions are made and plans are made that try to accommodate everyone’s needs. Most of the time it can work, sometimes one of us loses out. Dare I say it, sometimes, someone’s best interests can’t be met.

I can’t see how it can work any other way.


From → Social Care

  1. Sally permalink

    You put it brilliantly. The involvement is totally different than in a neurotypical family. Different requirements, intensity and above all duration!
    If someone can’t cross a road, manage money, deal with all but the most simple social interactions hold paid employment buy necessities cope with change wash themselves or call for help they are not going to be “flying the nest”. Any growth and increased independence will be minor and hard won.
    Anybody with a fantasy of learning disabled /autistic people being able to lead independent lives if only their blinkered parents didn’t hold them back-is either terribly inexperienced or about to cut a service. Or both.
    Life as the parents of a disabled person involves a series of exactly those sort of terrible dilemmas as you describe in which both can’t win. Choose the disabled person- be looked down on for neglecting work and your personal development. Choose work- well then, you obviously neglect your child. He has feelings too! Etc
    Only a fellow parent can understand, really understand, how difficult these frequent crises are, and they are usually when the day’s careful arrangements for care fall through.The carer is late, doesn’t show up. The place is unexpectedly closed. The transport doesn’t come.
    And all this will go on not until they learn to stand on their own two feet but unit we keel over. When I speak to anybody who thinks care of a disabled kid is not too bad I try to remind the, that it is off life. For the, the end of school means they see less and of their child. For us we see more.

  2. “Anybody with a fantasy of learning disabled /autistic people being able to lead independent lives if only their blinkered parents didn’t hold them back-is either terribly inexperienced or about to cut a service. Or both.”

    Well, quite. I shall tuck this up my sleeve and quote it as necessary over the next few years (transition)

  3. anonymous permalink

    Oppression is a wise mans sadness……

  4. Pauline Thomas permalink

    Sally I endorse every thing you say and yes only other people who stand in the same shoes as a parent/carer really know just how bloody hard it can get.

    I do not know about you but I would love to get through a daily paper without having to stop to see to my son. To look at a programme on telly without having to leave it halfway and lose the thread of the plot. To get up in the morning and only have myself to get ready. To amble round the shops with no limit on how long I can be. These simple day to day tasks most elderly retired people (like me) take for granted. I did once belong to the people who had time for themselves. That was when my son went to a day centre. That was before they were demonised by disability organsations that wanted to step in and make my son’s life better. Unfortunately it did not materialise.

    I smiled at your quote when you said ‘Anybody with a fantasy of learning disabled/autistic people being able to lead independent lives if only their blinkered parents did’nt hold them back is either terribly inexperienced or about to cut a service. Or both.’ So true

  5. As I said in one my tweets Mark – its a tricky issue and in my opinion one that will continually be used to undermine the ability of parents to act on their older children’s behalf or in their interests. Sara was right to point out the relationship between service provision and oppression and there is something doubly ironic about local authorities failing to fund support and then wanting to implement DoLS on the families they are often failing to support properly.

    Having said that as families it is imperative that we acknowledge the challenges that disability rights activism places on us and that we accept that calls for independence are not just well meant but are a fundamental human right. Unless we are able to do that our advocacy will continue to be dismissed in those quiet conversations between practitioners and politicians in which minds are made up and lives are changed.

    Because as long we give them the excuse that we might be failing to fully recognise our son’s or daughter’s right to an independent voice – then they will use it to keep things just the way things are.

  6. Brigitte permalink

    I have been learning different cultural concepts of family dynamics and responsibility living here in Australia and I feel Western attitudes are informed by economic interests and cultural ‘individualism’.

    One example is the expectation that ageing parents should be able to support themselves and not be a ‘burden’ to their children….apart from Western capitalist structures there is no comprehension of this family expectation anywhere in the world. I don’t believe our children are our superannuation insurance, but I hope to be on good enough terms with them in the future that if they are around to ‘help’ me, maybe mow the lawn or do heavy lifting, that will be normal and enjoyable for all of us because we care for each other and enjoy each other’s company. Another concept is the guilt of being looked after when we are ill…..we are not a burden to nurses and doctors, they have chosen to care for people and get paid to do so. Yes, be grateful for good care but don’t feel guilty!

    Equally, I know many many adults raising children who have daily contact with their own parents, live next door or in the same suburb, or like to talk on the phone regularly. They help each other, covering each other’s holidays in family business (Ie the grandparent’s business), picking up children as needed, driving to and from medical appointments…. Young adults stay at the parental home to find their legs in adult life, and may be helping with their family network, whether with younger siblings or grandparent’s commitments, or in some local cultures the extended ‘aunty’ and ‘uncle’ system.

    Why has this understanding of family networks become an obligation or a burden? I love our Western freedom that it is not an ‘expectation’ which binds us culturally to negative or abusive situations, but where the contact is chosen and supportive, why is it wrong? We have many grandparents in our area helping or living on site to parcel kids with a disability around the family, often because there are no other supports available here. But this gives the kid options, social experiences with different relationships from people who have chosen to be with them and help raise them (so presumably have their best interests at heart). We have active family members who have moved into the area after being widowed in order to have contact with their children and grandchildren, because these are the loves and reasons for living which are still available to them.

    I do not have any of this personally in my family, but over the years, because I like ‘community’, I have been able to find neighbours and friends who are happy to extend their networks my way to our mutual benefit. This is a voluntary family substitute which I know is given freely and is not an obligation to myself or my friends. It is generous and caring towards other living creatures, whether from me towards the rescue dog, the elderly neighbour, or the able bodied guy next door coming to help me lift my furniture as required. My neighbours nurture my children by paying them to mind pets when they are away, which is a win-win for all concerned.

    I know it’s hard to get away from the language around you and the concepts which have been researched and studied and which inform policies and procedures. We need evidence based information to move forward and question what we do and the safe guards that puts in place, but at the same time it doesn’t need to consume human interactions. You are a father who is looking after his son, and is lucky enough to also have the opportunity and live in a society where you can pursue personal development and an independent life within those boundaries. Sometimes we rail at the boundaries and sometimes we accept them, but you live in a society where you are free to choose to stay within those boundaries because you like being a parent and care for and enjoy your son? That’s okay with me.

  7. Brigitte permalink

    PS I also have young adult with a disability and don’t know what the future holds for either of us. I love my child and will continue to parent her and enjoy her, and dread the daily ups and downs which come with our lifestyle. At least I have enough freedom to have some control over our joint futures and don’t just have to lock the door and stay home any more, even if it is a battle with every system known to the government.

  8. Pauline Thomas permalink

    Brigitte roll forward twenty years and see if you will be so positive still. I really hope you will be.

    When my son was young he had one wonderful grandmother. His maternal grandparents were dead by the time he was two and his paternal grandfather died before he was born. Our neighbours were all supportive and kind. Life was nice and bearable. He went to a wonderful school and had support from social services in the form of a day centre which offered a good range of activities and he was mostly quite happy there. My husband and I was able to have some sort of social life while he had his. We were younger and active advocates for his best interests.

    Roll forward twenty years. Support cut or outsourced to companies that promise a lot but do not deliver. Day centre gone and replaced by luxury flats and a bit of social housing. Support pared down to the minimum and lots of people with a mental illness because of these cuts to their support. Elderly parents looking back and wondering what went wrong. Lets hope the powers that be in this country will sit up and take notice of the slow deterioration that has crept up and pushed many parents that are lovingly trying to cope with their loved ones needs into despair.

    • Brigitte permalink

      Hi Pauline.

      I am almost pathologically cheery, you are right to recognise that….so whether it’s substantiated by reality or not, I hope I still am in 20 years! I sincerely hope you have some supports or friendships out there which brighten the despair you reference, if not, have a virtual cuppa with me (I am in an opposite time zone), and we can at least vent on deteriorating services together.

      You are right though, we have very little support or services for adults over here too, and I haven’t got there yet. In Australia ‘independent’ living placements are in aged care homes. There is a debate (never a plan, just a white paper and a policy – sometimes unenforceable laws even) on that at the moment. One heartfelt comment from a young resident was ‘my friends keep dying’. Absolutely pitiful.

      All the best to you, Brigitte

  9. anonymous permalink

    Despair. Oh how desperate we have become to salvage respect dignity, independence, health and wellness.

    When P tries to voice and that voice is suppressed that is when the injustice begins.

  10. As Mark says most parents see their offspring go off more naturally – though one wonders once the Gov has lobbed the next cuts off what will clearly be the young and turn benefits into loans when exactly some young people will ever be able to leave and set up their own home. I think the comment about “oppression” is not about the compromises that are features of everyone’s shared life (though I’d suggest family carers most often get the worst of this) but more about the fears for their offspring. I always used to say my parents would have had their own (sometimes too often stated) ideas about what they;d want me to do but they couldn’t make me do anything I didn’t want to as I was independent of them. They also wanted to protect me ofcourse but again I didn’t always have to take their “advice”. The problem for parent carers I’d think is that it’s hard not to open some opportunities out for fear of hurt and to steer people in a “safe” direction. I don’t blame them but it can in some people mean restricted opportunities.

  11. Pauline Thomas permalink

    Rosemary you are right. Lots of parents/carers do overprotect their loved ones. Maybe I am one of these people. However, when families have witnessed their loved ones being ‘set up to fail’ so many times and the resulting hurt and distress felt by them when that happens can be hard pill to swallow.

    Do you think that Mark’s Steven would be having the good life he has now if Mark’s hand was not not the tiller? Is he being overprotective or is he being a good father? I think the latter. Don’t you?

    I want my son to be independent. I yearn for him to be independent. I want him to dress and wash himself. I want him to access the community on his own. Use public transport. Understand money and work out his own finances. But he cannot. He is 43 years old, uses a wheelchair, and will never be any different. I have to protect him because because no government, or commissioned LA companies have in the past or will do so in the future.

    Yes my son has restricted opportunities and I hate it.

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