«

»

Print this Post

My Brother, My Friend

My brother Eric can certainly talk. He presents very well. He is friendly and sociable. He asks good questions. He has interesting (and often “tall”) tales to share about his life. However, Eric is also extremely vulnerable. He can be manipulated and led because he is eager to please others. He can be intimidated easily. He may act impulsively in pursuit of mistaken goals. He can be quite determined to do things that would bring him in harm’s way. He is a complicated man who needs sensitive and insightful support from people who know and understand him well. This is exactly what he has received from the House Manager and Direct Support Persons in his Mosaic group home. I advocate for and advise my brother as a member of his “team”. He knows I have his best interests in mind as his legal guardian. He feels cared for and safe – so necessary for a person with anxiety issues. He makes many daily decisions himself but cannot make major, life-changing choices without help.
It is crucial that folks with ID/DD that dwell “in-between” like my brother be vigorously and accurately represented. Being verbal, and quite “high-functioning” they might appear to be candidates for the most ambitious goals of the so-called “self-advocacy” movement. I am greatly disturbed by present efforts to close sheltered work-shops. I am concerned that the group home living option might also be eliminated. One sweeping ideal for all is presented in the name of “choice”. Well intentioned zeal might be harnessed for political or economic reasons, ignoring the huge range of needs for the actual human beings with ID/DD.
My brother tried to work “in the community” with the support of a job coach but he suffered great anxiety and distress attempting to keep up. It was a deeply discouraging experience for him. On the other hand, once he started working at Elwyn, he flourished. He was so proud of his work and the paycheck he received. Eric and I were raised with a strong work ethic, so he would have been miserable without employment. There are far more important satisfactions derived from a job well done than the size of the paycheck.
Eric is now 65 years old and has retired but continues to see himself as a worker at his senior day program. He takes great pride in helping the staff with the daily routine. He keeps fit by using the exercise equipment and his interest in making beautiful drawings has been rekindled. He met a special friend there with whom he enjoys making the rounds of local restaurants. This is a fine setting for him at 65 but it definitely would NOT have been appropriate when he was younger. His particular disabilities required a structured, safe and low-pressure work environment such as Elwyn provided. It would be a tragedy and a travesty to deny persons of working age with ID/DD the choice of employment in a high quality sheltered workshop. I know this because I know what it has meant to my brother and life-long friend, Eric.

Permanent link to this article: http://www.familiesspeakingup.com/2012/10/22/my-brother-my-friend/

Leave a Reply