“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell


Tuesday, January 31, 2012

a life filled with "almost friends"

That is the phrase one of my students in the California Baptist University's Disability Studies MA program, Jennifer Baca, used to describe the too often experience of people with disabilities.  It is a powerful phrase, that is damning in its implications.  Many people who experience disability have lives filled with people who are nice, perhaps because they are paid to be caretakers, or social workers, or teachers or some other role.  They are nice and perhaps they are even friendly.  But they are NOT friends.  If I am a person with a disability I need to understand that...
  • People who are paid to be with me are not my friends. 
  • People in my life who are forbidden to be my friend by their organization, their profession, independent of how nice they are to me, are not my friends. 
  •  Experts who interact with me when they are on the clock and will not or cannot visit me when they are not on the clock are not my friends.
  • People who worked with me, then worked with someone else, or changed jobs but do not now interact with me are not my friends.
All of these people are "almost friends." 
But there is a huge difference between friends and almost friends.
  • Almost friends interact with me on the basis of a menu of services.
  • Almost friends see me as a part of their caseload.
  • Almost friends do not choose me.
  • Almost friends don't recognize the potential damage they do to me by submitting to human service standards that provide a distance.
I would hope that almost friends would recognize who they themselves are, but they actually don't.  In reality, they cheapen friendship by referring to themselves as my friends, they cheapen me by thinking that I need them to be almost friends in my life perhaps because they either don't think I can have real friends, or are perhaps so unaware of my life situation that don't know that I really desire true friends.  I wish almost friends would help me find real friends and not be confused about who they are.  They may be good and caring and helpful and professional.  But that doesn't mean they are my friends, and although I need good, caring, helpful, professionals in my life, what I most need is friends.  It seems my almost friends do not understand that.

My almost friends don't seem to get that.

McNair

11 comments:

Mark said...

Well said.

Anonymous said...

As i read the post it made a lot of sense to something i never thought about. It is so true that disabled people really do feel that those people are their friends. Working with children with down syndrome and mental retardation and even autism is such a rewarding job because it is true when its stated, "they are the happiest people." Every single morning that i get the students off the bus they always greet me with hello and a hug. Yes, some of them do have behaviors but for the most part they are the kindest people. It is sad to think of the friends in which they people do have because all of them are chosen. There is a show on nbc called "parenthood" and it raises this issue again. In the episode last night it is about the son who has Asbergers and he meets a kid in a wheelchair and the parents are so thrilled that their son actually has a friend. As a parent that has to be so difficult to see that your child is always the "odd man out" It is important that these people have lasting relatonships with people who care about them.

mamaporuski said...

My teenage daughter came from an orphanage so teaching her what true friendship was all about was hard (and still is!) In a school with a para all day but mainstreamed the "almost friend" of her para blocks any real friends she may have by being constantly there.
I praise God for a church body that has reached out and befriended my girl because of who she is, however we also have health professionals that have come along side our journey and I would call them true friends of our family. We may have met because of an appointment and "caseload" but they choose to remain long after the insurance pays. I think you can have both, and to judge one friend because of their profession is too limiting.

Anonymous said...

People who have a disability do not feel that they are not loved. This happens to mostly everyone that has a disability; they only have people who need to take care of them for example their parents, caregivers, or someone who has to take care of them. I feel that this is not right. People with disabilities are the same as people without disabilities; they just have something wrong with them. This has said that they need people to take care of them. People should still love them no matter if they have a disability. They need friends and family, as much as people who do not have a disability. Also, I feel that people who have a disability get made fun of all the time, and that is not fair to the people with disabilities. They were born with a disability or something has happen to them, and they cannot help their disability. If I was friends with a person who as a disability, I would try to love on them, care for them and be there for them. Also, I want to become a Special Education teacher, and if I was their teacher I would try to help them make friends, have people love on them and make sure that people do not make fun of them. So, I agree with this post I feel that people who have a disability should have friends and family and people who can show them that they love them no matter their disability.

Anonymous said...

People who have a disability do not feel that they are not loved. This happens to mostly everyone that has a disability; they only have people who need to take care of them for example their parents, caregivers, or someone who has to take care of them. I feel that this is not right. People with disabilities are the same as people without disabilities; they just have something wrong with them. This has said that they need people to take care of them. People should still love them no matter if they have a disability. They need friends and family, as much as people who do not have a disability. Also, I feel that people who have a disability get made fun of all the time, and that is not fair to the people with disabilities. They were born with a disability or something has happen to them, and they cannot help their disability. If I was friends with a person who as a disability, I would try to love on them, care for them and be there for them. Also, I want to become a Special Education teacher, and if I was their teacher I would try to help them make friends, have people love on them and make sure that people do not make fun of them. So, I agree with this post I feel that people who have a disability should have friends and family and people who can show them that they love them no matter their disability.

seeandbesafe said...

What an extremely enlightening post. As I sit back and ponder the gravity of every word I am almost brought to tears by the realness of the writer's comments. No one's life should be marginalized and no one should have their idea of friendship reduced to only care attendants and nurses.

Anonymous said...

I can understand the difficulties of those who have disabilities regarding friendships.
However, I worked with this population for years and have a different slant on it.
Some of the daily clients who came to our day program seemed as incompatible as friends as someone in your neighborhood, who has little in common with you because of a huge age difference or different interests. Others I really considered "friends" even though they were there because they were in our care. I know whenever a favorite worker would move or leave a job, it was heartbreaking to some of the clients, and I saw it repeated many times. Yes, some I visited in the hospital to be with while they were sick or scared; and I've called family members to check it, etc...but also as a worker, I was careful of boundaries because it was my job, which I couldn't take a chance on losing at the time. I remember joking with a friend who was non-verbal and used a computer to speak. He and I were always laughing about something. I forgot and used my nickname for him (which only he and I knew about) and a social worker looked at me and questioned what that was all about. I simply said that we were always joking, as friends do. However, I was keenly aware that I was being eyed. The client had suffered a head injury and was a funny, nice person and the age of my own children. We got along great. Also, along these lines, I hope the writer realizes that in regular, everyday life, we all have a feeling at times that don't have many close friends when it comes down to it. There is an ebb and flow as you transition from one point in your life to another.

Anonymous said...

Reading this article made me think about something that is never really brought up. It is true that many children with special needs mostly have “friends” who are associated with him or her because of his or her job; it is mostly on a professional basis and not always willingly. It is sad to think that I will be one of those professionals who are associated with children with special needs solely because of my job, and I will not necessarily be able to build a relationship with these people in a friendship role. One thing this article failed to mention is how the parents of the child with special needs feels watching his or her child grow up with out any real friends. It must be heart breaking to see all of the potential and “almost” friends his or her child encounters or works with in life. this article also fails to mention the lack of love the people with disabilities feel due to the fact that he or she does not have any true friends. It is sad to think people would no go out of their way to do something willingly for someone with a disability, just because he or she is different.

David Milliken said...

It is the final challenge for service providers. I get to teach an introduction/history of developmental disabilities to new employees. As we go from the dismal past to the enlightened present (a false sense of security by the way) they often wonder, "what's next?" Next is how well the service system embraces working ourselves out of a job by assisting people with disabilities in finding relationships that are not paid for. It is the only true security we can offer the people we serve. Quoting a former co-worker responding to staff complaints about a client’s personal friend choice, “The worse personal relationship is better than the best professional relationship.”

Rachel said...

It is hard sometimes when you have issues to not see the people that are paid to work with you as friends, because it feels like they really care about you. Though I know they are just doing there jobs. I also work with kids with Autism and i know I'm not suppose to be their friend but i feel like I have a connection with them. So I've seen this come to play both sides of it. It's weird because the people I tell the most stuff are my Therapist , Doctor, and Psychiatrist but they are not my friends, so it's weird because you are so open to them it's hard to separate yourself from them. I'm terrified of when I graduate from university and I won't have the same support system.

juarezcm5 said...

It is hard to imagine living life with “almost friends”; since friends provide a second family unit that, you are comfortable to be with. Friends are vital part of being part of society, because they experience many of the same feelings with you during different phases of your life. Now, that I am a mother it is hard to image my child not growing up with any friendships in their lives. As, young as preschool age, children want to be accepted and cry when a classmate tells them “you’re not my friend”. However, how do we help students with disabilities develop friendships, if society nowadays is so self-centered? Or is it? This blog brings to mind my brother; he graduated high a year ago and had my sister make him leis for his friend. My brother was a social guy, captain of the varsity soccer team, and with good-looking steady girlfriend, but what made him the sensitive guy who grew up with a bunch of women in the house (three sisters) was the friendship he develop with a girl around his age that had learning disabilities. Like any teenager he would from time to time talk about how he became friends with the girl, his high school soccer coach taught special education so the soccer team had meetings in his classroom so they would interact with his students. His coach left the school and the friendship they developed stayed intact, and we meet her on his graduation day. She was so delighted with the lei my brother gave her and that my brother had us take pictures of them together. This relationship was a typical high school friendship, I believe they both gained from it and not in monetary gains.