What’s Best for our Children: Carer’s Perspective

Presenters Name: Mary Simani

“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)

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

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.

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.

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

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

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

“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)

What’s Best for our Children: Carer’s Perspective

Presenters Name: Robina Yasmin

Background Information

Robina Yasmin

•Professional

•Cultural

•Family and

•Social

•Pakistan – Kashmir •6 Children – 3 daughters & 3 sons• Carer •Member of the board – Multicultural

Disability Advocacy Association •Professional accomplishments

My children mean everything to me; I am always willing to do what is best for them.

• 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

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

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

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)

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.