Love, Learning Disabilities and Pockets of Brilliance by Sara Ryan

Author:Sara Ryan
Language: eng
Format: epub
Publisher: Jessica Kingsley Publishers
Published: 2020-09-21T00:00:00+00:00

The tasks of dependency work

Kittay argues that dependency workers direct their energies and attention to their dependency work, which involves additional tasks over and above the typical parenting jobs such as feeding, dressing, carting around to school, the park, shops, bath and bedtime. It can also be more enduring. Some examples:

• administering medication and medical interventions

• personal hygiene tasks

• advocating and activism

• negotiating (and policing) support and services

• attending appointments

• writing letters or emails

• picking up incontinence products from soulless business parks

• changing nappies on a public toilet floor

• reading reports

• filling in forms

• additional washing.

Parents are constantly trying to prevent the downgrading of children to bundles of burden and toil rather than fully fledged little people.

It is everyday life as a parent with a ton of stuff on top. Furthermore, staying at home without a break can be exhausting. Many parents are able to release their children into a world of childcare opportunities around school, including childminders and after-school clubs and activities, and eventually children take themselves to and from school. The lack of opportunities for our children to do this, because of a lack of appropriate support, can lead to parents experiencing isolation and stress.

To do this dependency work, energy is key, and this can be disrupted by the boundless energy of children, their rule-breaking tendencies and the way in which sleep may not be high on their agenda. Jane recounts the challenges involved in constantly watching her son without a break:

I find that anything that he needs in terms of like nappies because he is still incontinent or Disability Living Allowance, everything is a weight on your shoulder because the services are so short. We don’t…we have only just started having respite care now and he is three and a half and it is a real sort of struggle. That has been a real challenge because we are with him 24 hours a day, 24/7, we care for him 24/7 and some days he will just not let up. From six o’clock he is up in the morning until seven o’clock at night, he is up and he is around the house, and he has no sense of danger, and a very, very low pain threshold. So at any minute he can do something and you have got to sort of stop him and tell him or he can have an accident and he won’t tell you. So there is always something sort of in the day that will prove challenging with him.

Amanda, similarly, describes this exhaustion:

And you know it is full on from…they get up in the morning and from them going to bed, when they are in obviously. I am quite relaxed now that they are both at school. It is full on. You know, until they are asleep you know and then it is usually sort of half nine, quarter to ten before we have tidied up and we sit down and [sigh] oh [laughs].

There is yet another tricky balancing act here for parents

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