Our Reality, Part 2: An Open Letter to the Public

Our Reality, Part 2: An Open Letter to the Public

Second in a series. Read part one.

Dear people,

My name is Reo Kobayashi, and I live with spastic quadriplegic cerebral palsy and visual impairment, physical conditions that affect my mobility but don’t affect my mental capacity.

If you’ve ever wondered how to interact with a physically disabled person in public, the first thing you need to know is that, when you meet us for the first time, you might feel some hesitation. Just talk to us like you would talk to one of your friends, and you will see that we’re ordinary people with ordinary lives, but extraordinary circumstances. We just want to be treated like everybody else.

If you see somebody who has a caregiver, always talk to the person, not the caregiver. It actually hurts us emotionally when you don’t speak to us directly because you are implying that we don’t exist, and all of us want to feel accepted in our own way. You can talk to us just like you would any other person. And just a fun tip: If you are super tall and we are in a wheelchair, please kneel down so we can talk to you at our eye level.

Don’t be afraid to hug us and show human emotion. Use your basic manners in the same way you would with a typical person, and don’t feel bad about asking about our disability. Please understand, however, that some people might not want to talk about their disability.

Treat us normally and talk to us in an age-appropriate manner.

If you ever become friends or acquaintances with people who have a physical disability, do your best to treat them as normally as possible, but keep in mind that they do have a physical disability. Therefore, they might ask you to do certain tasks like opening their food and giving them directional help if they’re in a power chair. You might have to push the wheelchair if they’re in a manual chair. In extreme cases, they might ask you to help them in the restroom. Always, in those circumstances, do what feels comfortable to you.

Please keep in mind that we don’t necessarily want to have caregivers all the time, and don’t mention or suggest or ask if we have a caregiver. Even though I have three caregivers, sometimes I’m by myself because I like being by myself. Having a disability can put us in a bubble where we can’t experience regular society, and it is important for us to do so for our social and emotional development.

Here’s a tip about people with cerebral palsy: We have a tendency to drool. Please don’t mention that we should wipe our mouth. That really bugs me because it’s something that most of us cannot help. If it bugs you, please provide us with some napkins or something to wipe our mouths with. I know it might sound funny or silly, but that really is degrading because you are telling us about our flaws.

Don’t just give us help, ask us if we need help first, because sometimes we don’t want it and sometimes we don’t need it. If you ever need to transfer somebody, always follow the instructions of the person with the disability.

Unless you know the person well, don’t make jokes about their diagnosis with them. People with disabilities are extremely funny and bright people who just love to be a part of everything that society has to offer, but jokes can also be offensive. On the other hand, don’t be afraid to give us a hard time, because one of the things I’ve learned is that sometimes we need a wake-up call.

My most important advice for men and women is that if you fall in love with someone with a disability, it is difficult, but know that it is OK. We live in a world now where people are more open-minded. Yes, it takes a very special person to date someone with a physical disability, but it is not impossible. We are capable of loving and being loved. We have the same emotions you have, so if you start to fall in love, don’t deny your feelings simply because the person has a disability. Embrace it and know that it is OK.

I hope that this has given you some insight.

***

Note: Cerebral Palsy News Today is strictly a news and information website about the disorder. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.

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