"Give a man a fish." - a very personal story.

byJewelia

1.4K followers

Updated 6 years ago

I e-met a few people in our wonderful WA community, who unknowingly inspired me to share a personal story.

My husband and I raised a son, who despite my perfect full-term-no-known-health-issues pregnancy was born with severe brain malformations, and totally blind due to underdevelopment of both optic nerves (they are also part of the brain). While all we knew was that our baby was blind, we set our main goal: to raise an independent, brave and determined individual - not a whiner who fully relies on care from other people. I had no doubts that we'd be able to achieve this goal. I lost my confidence when our son showed first signs of intellectual impairment, but I didn't lose my persistence in trying.

We walked his childhood life with him side-by-side and helped him make reasonable choices based on his interests and skills. We explained his medical conditions to him; he knows all his numerous diagnosis. He is also aware of his amazing abilities and knows to focus on them and work on their further development.

We've taught him that there are a lot of kind people, who are willing to help. However,

~ don't overuse their kindness - first try things on your own, and if it doesn't work, then ask for help,

~ be grateful when you receive help,

~ care for others and offer your help to others when you are capable of helping.

And, we've also taught our son to be very careful when speaking of politics, religion, sexual and cultural differences, etc. We've told him that if there is a chance that he could skip a comment altogether, he'd better use that chance, because it is very easy to insult others accidentally just because of poor understanding of the situation and his difficulties in verbally expressing a thought.

We were not confident of how much of these principles a person with a differently built brain would be able to learn, but we didn't lose hope and kept trying...

Who helped us? The society: the school, friends, private teachers, instructors and coaches, strangers – every kind person whom we’ve met on our way, and we were lucky to meet many.

Our son still lives with us, and this process of teaching and mentoring him is ongoing. However, at his 26 y.o. we can make some conclusions and see some results.

As a result, our son can perform some daily living tasks independently; some tasks - with supervision and help; and the rest must be done for him. He still needs and will always need help in decision-making and managing his life.

As a result, our son graduated from Berklee College of Music with summa cum laude. He is a friendly and usually polite young man. He is well accepted in the community. People hire him to play music at many events and in different venues. He dances Argentine tango. He swims, windsurfs, flies a trapeze and performs aerial acrobatics, climbs the rocks, rides a tandem bicycle, skies, and skates.

As a result, he is happy and a hundred times more capable and independent than we could imagine once we learned everything that went wrong with his intrauterine brain formation.

As a result, I become very upset and irritated when I see or hear or read from another, and another, and yet another person with disabilities whining, flashing his/her disabilities in front of people’s faces, triggering pity, expecting that everyone has to do things for him/her and receiving help without any signs of gratitude. I am angry with such behaviors, and yet, most of the times, these people cannot be blamed.

Who is to blame? The society: parents, caregivers, other family members, friends, interest-based communities, and strangers. We become kinder, we become more patient to each other, more supportive, more open-minded and aware of other people’s medical diagnosis. That’s wonderful!

Wait, then what's the problem? The problem is in a balance.

• When we do for a person more than he or she really requires, (s)he won't learn and (s)he won't develop.
• This is not the help.
• When we accept an impolitely stated request or silently forgive a person for not saying "Thank you!" (s)he gets used to it and first takes help for granted, then expects things to be done for him/her, and then demands things to be done for him/her.
• This is not the help.
• If we don't encourage and accept simple care or whatever help people with disabilities offer to us, they will stop offering.
• This is not the help.

I hope you remember this saying: “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”

Help is to enable the person to do things for him/herself rather than doing them for him/her. Help is to teach a social skill, and meet the person in the middle: I’ll make a step towards you and forgive your mistakes (not that I won’t point them out to you!) because I accept your differences; you make a step towards me by learning social rules and etiquette and trying to follow them.

I call out to the WA community and the rest of the world: please stop being politically correct. Instead, be thoughtful and reasonable. Most often, cognitively impaired people are naive and defenseless. It is fairly easy to make such person believe in anything you wish. Wish well! Not only wish well, but also set up the achievable goals for them! When you tell them "you can do it!" - they believe you. Don't lie to them, because there certainly are limitations on how much they can do. If you see a person, whose learning abilities are weaker than typical due to some sort of disabilities, try to simplify things for him/her, don't confuse him/her with extra information, walk him/her small steps, help him/her stay focused on one task at the time. People with learning disabilities usually process one-step instructions better than multiple instructions. If you really want to help them, send them out with one task, and make them come back to you for the instructions for next one. Don't give out next task instructions until you make sure that the first task was completed. Correcting errors (one at the time) in the first task is a totally new task for them.

It is difficult to really know each person in this huge community, especially since we are only communicating in writing. However, when you write to someone, who is new in your circle of communication, please take a moment to first take a peek at person's profile story. Pay attention to people's ability to communicate in the live chat (as it's more dynamic, but also in any other channels of written communication): you'll soon be able to differentiate between poor English skills and a general weak ability to verbally express a thought. Taking these additional steps will help you to be kind and helpful to the true meaning of "the help".

I am very proud of my son. He deserves respect and serves as an inspiration to many. His stage name is Santon; in case you are interested to find out more about him, he has a website and a Facebook page - search for Santon music...

Of course, there are other strong and brave, resistant and persistent, energetic and positive, enthusiastic and inspiring people. I’ll leave you with couple other names, which if you haven’t heard yet, feel free to google: Haben Girma, Nick Vujicic, Achmad Zulkarnain (DZOEL), and even WA competitor (or, is he?!) Jon Morrow

These people are heroes and inspiration. However, none of them is intellectually challenged. Is it because our society confuses the true meaning of help? Perhaps …