Jang Hyun Ok; Mother of Bo Bae

I interviewed Jang Hyun Ok who is the mother of a disabled person, Kwak Bo Bae.

Kwak Bo Bae

Birthday : 1999.03.01 (21 years old)

Cognitive Ability : 1.5-year-old baby

Disability : Developmental disability (Autism) : The government hasn’t approved that she has it, but she has seizures* (epilepsy), so she has to eat medicine everyday. When she has a seizure*, she passes out. Then, she has uncontrollable jerking all over her body.

Places Where She Needs Help

- She doesn't know what things are dangerous and what are not

- She’s not allowed to go to stairs or high places

Personality

- She likes to play with water

- A little tenacious, and stubborn

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Questions

1. How did you feel when you realized that your daughter had a disability?

I didn't want to believe it. I thought the doctor was lying to me.

2. Do you have any hardships?

Life is hard. SO MUCH! At least one family member wouldn’t get to have free time. We always worry about her future. In addition, we always have more work to do because we can’t rely on other people to help us.

Also, she has to eat medicine, but because the government didn’t have any services, the process in getting the medicine was very difficult. The government should provide service for these people (medicine, doctors who visit homes, etc.).

3. Did you ever experience any misunderstanding or unfairness because your family member has a disability?

Because she can’t communicate, we can’t know what she has experienced. However, we can know what treatment she got by seeing people glance at her, laugh at her behind their backs, and point at her. Also, in some facilities, she gets unfair treatment because they don’t want complication, they just want a “yes.” There are also some places she can’t go, just because she has a disability.

4. What are some services you get from the government?

Personal assistance, voucher, about 270,000 won from the government (when they become adults), electricity fee discounts, water tax discounts, and vehicle discounts

5. Through what kind of effort are you overcoming this disability?

When a student, we get treatment from a Welfare center. We also get services from the government related to treatment as well.

6. How should a person without a disability act towards you (what kind of attitude makes you comfortable)?

Leaving us alone and not giving any attention except when we ask for help. Even though they try to help us, there is no actual way in helping us so leaving us alone is the best choice to do.

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Family Service Requests (Survey)

① Information

- Information of services that the child can get in the future (ㅇ)

- Information about the child’s condition ( )

- Information about how to teach disabled people ( )

② Service Requests

- Posts about counselors and disabled people’s parents (ㅇ)

- Information that the child’s teacher or doctor can talk about ( )

- Time to be by himself/herself (ㅇ)

③ Community Services

- Day care center or kindergarten (ㅇ)

- A doctor or dentist that understands the child, or a person who can take care of the child (ㅇ)

④ Financial Requests

- Treatment fee (physiotherapy, behavioral therapy) (ㅇ)

- Financial support for playrooms ( )

- Medical expenses or transportation fees (ㅇ)

- Expenses to buy necessary mechanisms for the child ( )

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※ What is a Seizure???

[A sudden attack of illness, especially a stroke or an epileptic fit]

If you or your family have seizures regularly, then you have to test your brain wave in the HOSPITAL!

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source : pension