Life Lessons From My Brother (Who Happens to Have Down’s Syndrome)

When my younger brother BJ was born, I was twelve.  I remember being so excited to meet the newest member of our family.  Before my dad took my brother Rob and me to the hospital, he sat us down for a talk.  My father looked sad and unsure as he told us our baby brother was born with “problems.”  He told us BJ had Down’s syndrome, and that meant that he would never be able to do the things a “normal” child would; it would take him a long time to learn to speak and walk, he would never be able to read and write, and he could have severe health problems also.  Needless to say, this came as a huge shock, and I tried to prepare myself to see my brother hooked up to tubes and wires, fighting for survival.  However, that’s not what I saw when I got to the hospital.  Yes, BJ was in an incubator because he was jaundice, but other than that he looked like a chubby, healthy baby boy.  When I was much older, I learned why my father was so afraid.  After BJ was born, the pediatrician came in to my mom’s room and informed my parents that BJ had Down’s syndrome.  He said that because of this my brother would be severely mentally retarded and would require constant care for the rest of his life.  He finished by stating that the best thing my parents could do was place him in a home for the disabled and forget they had ever had him.

Fortunately, my mother refused to listen to the doctors, because she knew through experience that physically and developmentally disabled people could accomplish great things.  Her younger brother, my Uncle Fred, had been born with spina bifida.  Fred was a paraplegic, but that never stopped my uncle from trying new pursuits.  He graduated from high school, held a job, played wheel chair basketball, collected coins, was a HAM radio operator, and loved Monty Python movies.  Most importantly, he was one of the people to lead the fight to make all public buildings in New York State handicapped accessible.  We still have the newspaper articles detailing his protest at the state capital.  Yet when he was born, his doctors doubted he would survive.  He proved them wrong and accomplished great things in his life.  So instead of listening to BJ’s doctor, my mom began doing research on Down’s syndrome.  She contacted parent support groups and advocates for the disabled, and before we knew it, BJ was enrolled in an early intervention program to help him develop both physically and mentally. Although he’s had his ups and downs (doesn’t everyone?), today BJ is a healthy and happy 32 year old who lives in a group home with other guys his age. He loves painting, playing video games, and going to the movies. Recently, he has started his own wood turning business.

If my grandmother and mother would have listened to “the experts” when my uncle and brother were born, our families would have missed out on having these talented, giving men be a part of our lives. Often in our society when we see people who are different than us, whether those differences be physical appearance or ability, skin color, ethnicity, gender, or religion, we make assumptions and judgments instead of taking it upon ourselves to become educated about those distinctions. When we don’t appreciate the diversity of those around us, we miss opportunities for growth in our own lives.  I’ve tried to instill this lesson in my middle school and high school students through the literature we read and discuss, and I’ve endeavored to raise my children with this sense of acceptance as well.  I assumed, that with the passage of time, the stereotyping and judgement that my uncle and brother faced would have faded, especially from people in the medical and educational fields.

It’s obvious that I was wrong based on what happened to BJ just last month.

My brother had a meeting regarding his job within the community.  BJ works one day a week at the local sandwich shop.  This position was secured for him by a state agency that has the goal of getting all mentally and developmentally disabled individuals outside employment instead of having them spend their days in a workshop setting.  As a developmentally disabled adult, BJ has the right to have an advocate present at these meetings to speak for his interests.  My mother, who is BJ’s advocate, was not informed of or invited to attend this meeting.  The purpose of the meeting was to evaluate BJ’s job performance, as well as make a plan for the future to ensure that he moves forward toward his goal of full time work.  My mom received the paperwork from the meeting much later, but the first issue she was made aware of was that BJ was very distraught when he returned from the conference.  He told his group home supervisor that they were making him give up his wood turning business.  This didn’t make any sense—why would an organization that was designed to help the handicapped get jobs want to stop a small business that was becoming successful?  When the person who had been in charge of the meeting was contacted, it was determined that that was exactly what they wanted to do. The supervisor, we’ll call her “Mrs. Smith,” told my mom that BJ needed to give up his business because it was interfering with his job at the sandwich shop.  His efforts should be solely focused on that job, and according to the plan that Mrs. Smith established, BJ was not to speak of his woodworking business anymore, either to his coworkers at the sandwich shop or his care providers at the group home.  Support of any kind for his business was to end; coaching efforts were to be offered for his sandwich shop position only.  In return, BJ would be guaranteed one four hour shift per week at the shop.  One four hour shift per week?  What about the other 36 hours BJ could be working to earn income?  When my mother asked this question, Mrs. Smith informed her that she had 30 years of experience in her position and she knew what was best for BJ.  She also stated that if BJ or my mother didn’t like her decision, she had the ability to take away the sandwich shop job permanently.

When my mom told me what was going on, I began helping her fight for my brother’s rights through phone calls to Mrs. Smith’s superiors and letters to various agencies and politicians.  I’m confident that with my mom’s persistence, this situation will be resolved and BJ’s business will continue to grow.  He recently gave a presentation of his wood turning skills at a fundraiser, and ended up with an unbelievable number of product orders from gift shops and individuals across the area.  At this rate, his wood turning skills will provide him with full time employment in no time.

But what if my mom had listened to those doctors when my brother was born?

What if, as a family, we accepted the decisions of people like Mrs. Smith who want to bully and manipulate my brother into doing something that is not in his best interest?

What if I accepted the idea that people who differ from me in intelligence, gender, color, ethnicity, or religion are not valued in society?

What if I was complacent, and as a teacher and a mother I did not educate my students and children to see everyone’s worth, to value individual differences enough to stand up for others when they are being treated unfairly?

If my brother BJ had not come into my life, I don’t know if I would have realized the importance of acceptance, and the significance of standing up for those who cannot stand up for themselves.  Every day through my words and actions I try to impart this moral to my children and my students.  My younger brother BJ taught me this lesson, the most important one of my life.  I am forever grateful that my mom did not listen to the doctors and listened to her heart instead.

BJ photo

My brother Bj and me

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2 thoughts on “Life Lessons From My Brother (Who Happens to Have Down’s Syndrome)

  1. Anonymous says:

    Missy – just discovered your blog thanks to your mom. Your writing is wonderful. Your article regarding BJ was superb. I enjoyed so many others also. Keep writing and I’ll keep reading.

    Like

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