Editorial: Families whose baby or infant has significant challenges to development and learning are a severely oppressed minority group. Part 2: Some reasons why
Parents’ tiredness, low self-esteem and stress might result in them keeping themselves to themselves
In the first part of this editorial I suggested there are two separate worlds:
- the smaller one with families whose baby or infant has significant challenges to development and learning and the people who know their needs and are trying to help
- the world at large in which the general public are not aware or concerned – or just do not give a damn.
It is interesting to think about how this has come about and why it continues. My reasons include the following. They are in no particular order because I feel they all depend on each other.
1. Press and media only take an interest in these families when there is a legal dispute about switching off life support or when a parent kills a child or commits suicide or both. They typically focus on bad news but, on the other hand, frequently carry positive stories about people overcoming cancer or loss of limbs – but not yet about families surviving the challenges of the first couple of years.
2. Politicians have no urge or reason to consider these families because they are a small population and their votes do not matter very much.
3. Academic interest in, or support for, these families in our universities and colleges is rare.
4. When the medical world attaches the word ‘disability’ to a new child then the child and family can be subject to the prejudice and discrimination that people who have physical, sensory or mental impairments suffer at all ages. At worst, this might bring the ‘don’t give a damn’ response.
5. For a variety of reasons, the general public might rarely or never come into contact with families whose baby or infant has significant challenges to development and learning. This can be because:
- the child is in hospital for periods of time and then has frequent visits to outpatients – all keeping the child away from the normal childhood places
- parents might be physically unable or nervous about joining other families in mother and baby groups, playgroups, etc.
- A child’s special buggy, oxygen tank, etc. might make people nervous of approaching and starting conversations
- Parents’ tiredness, low self-esteem and stress might result in them keeping themselves to themselves.
6. While oppressed people can and do struggle, more or less effectively, to improve their conditions, parents in this oppressed minority are probably, too tired, too busy and too impoverished to fight campaigns. Also, the pre-school years pass very quickly, after which parents might be in a long struggle for effective education!
Peter Limbrick, September 2021
To be continued. Your comments welcome. Post this into your social media if you wish.
Part 1 is here
After Part 1, the following comments came from Lidia B. Giúdici, Pediatra- Neonatóloga,
Directora de la Carrera de Especialización en Desarrollo Infantil- Facultad de Medicina-UBA
Directora Académica de ALSEPNEO- Asociación Latinoamericana de Seguimiento Pediátrico y Neonatal.
“Stakeholders and decision-makers don´t take into account that the investment in these "minorities" will bring huge benefits to individuals and the society. The cost of not delivering appropriate assistance results in deep pitfalls on development, education and work through adulthood.”
(A fair ‘system’ provides effective help to all families in the city, region or country that want it.)
“Completely agree. I rather call it: support- accompaniment- counselling- help to navigate health and education systems.”
“I believe that "inclusive" education and health practices should be a two-ways door. The two worlds should work together, because people in the "large world" can suddenly slip into the smaller. It is very concerning that despite existing laws in many countries regarding the holistic assistance of early childhood well-being, they are not enforced and there is not funding for them.”
"Are we going to get there?"
