Mary presented on her experiences as the carer for her two sons with disabilities. She discussed the challenges of lacking family support, financial difficulties, and suffering from depression. She emphasized breaking from strong cultural beliefs that viewed disability as a curse. Mary wants service providers to have a welcoming environment, cultural learning, diverse and humane staff, and inclusive activities tailored to individual needs and paces.
Robina discussed her role as the carer for her six children, three with disabilities. In her culture, disability is seen as a curse and punishment, but she believes all children are blessings. Her challenges include lack of family and community support, isolation, and financial difficulties. Robina wants culturally responsive services that provide language support,
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Carers' perspectives on supporting children with disability
1. What’s Best for
our Children:
Carer’s
Perspective
Presenters Name: Mary Simani
2. “We think sometimes that poverty is
only being hungry, naked and homeless.
The poverty of being unwanted, unloved
and uncared for is the greatest poverty.
We must start in our homes to remedy
this kind of poverty.” (Mother Teresa)
3. Mary’s Background:
Professional – Carer, formerly with Corrective Services and Diploma in
Community Services
Cultural – Indigenous Fijian
Family – 5 Children, 8 grandchildren
Social – Volunteer at MDAA
4. I have two sons, Jason who is 32 years old and since
birth he has had epilepsy, he is also partially deaf in
the left ear and he has intellectual disability.
He also had an operation 9 months ago
on his right leg; a type of reconstruction–
replacing the bone in his leg with iron
plates and screws.
5. My other son Henry has just turned eight
years old; he has Prader-Willi,
sleep-apnoea, behavioural issues.
These conditions were all noticed
between the ages 4 and 6.
6. MY CHALLENGES:
•I had to face my fears of being alone and raising two sons with disability.
•Lack of support as my family were overseas
•My financial situation and vulnerability impacting on my housing
•I suffered from depression because of the situation that I was in. Before my
depression I was in control of my life and was happy; I had a good career, a
successful business and a happy family.
•Breaking out from the strong cultural beliefs
7. Cultural Beliefs
From my cultural perspective, we Fijians are not
allowed to talk about our family members that have
disabilities
Responsibility is with the family
Disability is seen as a curse from our forefathers
8. What kind of service providers I want to
work with:
A welcoming environment
Cultural learnings and sharing
Staff who are humane
Diverse staff
Inclusive activities that develops our capacities
according to our pace
9. “We ourselves feel that what we are
doing is just a drop in the ocean. But
the ocean would be less because of
that missing drop.” (Mother Teresa)
10. What’s Best for
our Children:
Carer’s
Perspective
Presenters Name: Robina Yasmin
12. •Pakistan – Kashmir
•6 Children – 3 daughters & 3 sons
• Carer
•Member of the board – Multicultural
Disability Advocacy Association
•Professional accomplishments
13. My children mean everything to me; I am always
willing to do what is best for them.
14. • In my culture, people believe that if your child is
born with a disability it is a curse and you have
committed a sin that is unforgivable in God’s eyes.
• I believe otherwise, I believe that every child is a
blessing from God.
• At times I feel helpless and depressed but all I can
do is pray to God to give me strength with my
situation
15. Challenges:
• Lack of Support I had no support from my husband.
I have no support from my family and feel very
isolated. “I felt trapped….”
• Lack Independence
• Community Attitudes
• Financial Difficulties
• My own Health Issues
16. What is a Culturally Responsive Service for me:
• Provides language
support
• Respects my religion
and my culture
• Respects my
confidentiality
• Knowledge of culturally
appropriate services
• Involving us carers in
training and projects
which gives people
knowledge, confidence,
and self esteem
17. Lessons:
• We are the same but different
• Fetch water from the well or from the spring
• Do not just look at the surface, hear what
isn’t being said
• Patience is bitter, but its fruit is sweet (Jean-
Jacques Rousseau)
18. People’s development should be viewed as a human
rights issue, not as a question of simply looking at
financial costs.
Any program’s progress can not be exactly measured
by the financial gains but also by the social uplifts it
brings to people.