“ Blame the Brain” Making a different to Pasifika People with Disabilities: “ Iga S ia e Tau mena Tose”
Sing a song for opening: Pick up the ukulele and a kahoa and flower . Start strumming the ukulele as if you can play. When finish let them know that you cannot play .
The Special Mother by Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? S omehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marj orie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? S he's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience? " asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. S he has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. S he has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has j ust enough selfishness." The angel gasps - "selfishness? is that a virtue? " God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. S he doesn't realize it yet, but she is to be envied. S he will never take for granted a 'spoken word'". S he will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
Different People of different cultures refer to social networks in a very different way. In meeting people of other Pasifika Island, it is very important to have a good cross cultural understanding. Setting up social network with other cultures can become challenging. Respect for each other’s sensitivity to customs, practices and beliefs is important. The Attitudes, beliefs, and practices are the muscle, blood, and skin of social network. In this discussion the focus is on Pasifika Island population that lives with having a Disability here in Aotearoa accessing services. If we conceptualise the structure of network as a set of connections between people, then content represents the types of things that flow from or to each person.
One Thing Will Lead To Another” … Teach and Nurture Understanding The Disability
I would like to Share a story Titled “One thing will lead to Another” by Karolini Tutavaha
Story Telling: Chad is a 31-year-old man, who was born 0n the 12 th Feb 1986. Chad was born with a cleft palate, a squint in L eye, and at 3 months he contracted viral meningitis, at the age of 1 he started having respiratory problems ending up with a diagnosis of Asthma, he was a floppy baby. At the age 3-4 he had an assessment and was given another diagnosis of Developmental delay, and then later receiving a report saying he had autism, I was told that he was not going to walk, talk and will remain in nappies all his life. I then decided that my goal in life was to set my own goals on how I was going to bring Chad up. I then decided that If I could teach Chad how to walk and he won’t be dependent on others, If I could teach him how to talk and not rely on others and If I could teach him how to use the toilet It will save his dignity as he got older, save money on buying nappies and will not rely on others then “One thing will lead to another”
Teaching Chad how to Walk: Chad took his first step when he was 3 years old, (I was not working then) I was giving him daily massages, standing him up against the wall, spend an hour every day doing physio with him until he took his first step. he said his first word at the age of 4 (mum).
Teaching Chad how to talk – We went and visited a SLT specialist just the one visit. From that visit I had asked the Speech Language Therapist if she could show a programme that I could take home and use this on Chad, which I did. The time was when I showed him a picture of a bird and did the bird sign and said Bird, I kept on doing this repeatedly every day for a week. 4 to 5 weeks later we were watching TV and there was an add with a group of birds flying, he saw that and looked at me and said “mum” sign BIRD and saying Bur Bur for Bird Repeatedly, and as you know “one thing led to another” Lots of pictures, lots of signs. His first kindergarten at Settlement Rd,Papakura. We ended up having signs around the house so he can use it or show what At the age of 6 years old he started school at Rosehill special needs school, where he was getting picked up by the Taxi to and from school.
Teaching Chad how to use the toilet: I was determined that this stage to toilet trained regardless of his intellectual impairment and how well he understood. Thinking of what developmental delay was, I needed to go back to the actual age of when I was toileting the other kids. I started with showing the fun side of it that every time he used the toilet that we has had to clap or give him lots of praise. I remember one time when he was sitting in the toilet and did a pooh big praise for doing a poo and every one had to clap before he could get out of the toilet. and at 6 years old he signed toilet and took himself to the toilet, there was lots of reminding until he
To promote the involvement of Pasifika People with Disability so that their culture are understood and recognised in the wider community
These social forces from the ethnic group too often we have neglected to consider that’s what makes people experience in the community “success” or “failure) are intimately tied to the kinds of relationships forged and maintained in this context. It may be difficult for some Pasifika family to ask for assistance when they perceive other people’s needs are greater Pasifika People are under slightly represented among clients under disability support service.
In hindsight from a Pasifika Island perspective this kind of belief about disability can hinder relationships and prevent bad experiences: One bad experience happens and will put a family or carer of not using other networks or turning down networks in the community. There is a need to build capacity and capability of Pacific Disability workforce here in Aoteroa and how do we do this…
‘...To understand people perception of disability we must develop a better understanding of their culture, and once we begin to understand perception of disability, we better understand the cultures in which they develop ... We can and should investigate culture and perceptions at the same time’. Fitzgerald, 1993 Fakaue Lahi Any questions?
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