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

Friday, January 08, 2010

Regulated lives, regulated relationships

Well, a light came on for me this morning while I was mucking out the horse's pen. I was blessed with the opportunity to address a group of case workers from the Inland Regional Center on the issue of community integration of persons with disabilities. They were a great group and I had a great time. One point that I make in the presentation is that, particularly for persons with intellectual disabilities, their lives are filled with people who are paid to be with them. That always bothered me because I didn't like the idea that the only way I, as a disabled person, might have an interaction with someone, it seemed, is that if the person was paid. Not only that, those who are paid restrict the unpaid people that I might have access to. They make them do things like get fingerprinted, or other things that change them from friends into regulated (although unpaid) people in my life. The touch of the regulated kills the natural. So I don't like that.

But the light that came on for me, and I recognize it is obvious but a subtle point, is that those who are paid to be with me are regulated. So it is not sufficient that they are paid to be with me, but they also are restricted by their menu of services, how our interactions must be structured, when and where they can be with me, what our interactions will be, and so on and so on. They can be with me when they are acting as a professional human service worker, but cannot be with me when they are acting as a regular person. I can only have a relationship, therefore, with professionals who are experts in understanding me when they are acting as professionals. At least that is what they think. They have been so conditioned by their regulators, that the thought of having personal relationships with people with disabilities, simple friendships, never enters their minds. This is a VERY sad state of affairs. People who have the best chance of understanding me as a person with a disability, people who have the most understanding of my disability and how it will affect social relationships, people have the best ability to advocate for me, people who can demonstrate to others how I can be socialized into regular life through their own invovlement with me, are professionally socialized and regulated into thinking that they cannot have a personal relationship with a disabled person.

As I shared with the group from Regional Center, caring case workers would say, "I am not permitted to interact with people with disabilities outside of work. It is not allowed in my job!" Now that is sad because this agency serves thousands of people with developmental disabilities and the perhaps several hundred caseworkers who have chosen this field as a career feel like they can have no person to person (as opposed to person to professional) relationships with any of them. They are also blinded to the fact, perhaps because of their indoctrination, that there are other people with disabilities in the community who might benefit from a personal interaction with them. On one level, I don't blame them for their oversight. They have been so conditioned in their training and by their handlers in their working life about what their relationship with disabled people should be, they almost cannot imagine personal friendships with these folks.

We have now had perhaps 30 years of efforts at integrating persons with intellectual disabilities into the community. Those who live in group homes are the ones I am particularly thinking of. And in my opinion, our efforts at community integration have failed miserably. There are a lot of reasons for this but let me give you two that I am confident are true. First, professionals in human services, either due to their training, or their personal feelings, feel no personal responsibility for having regular friendships with people with disabilities in their personal lives. As a result, those who would have the greatest likelihood of facilitating integration are not doing it. They are expecting others to do something that they either do not want to do or feel regulated, because of their work, out of doing. If the professionals will not have friendships, why would we expect the average person to have friendships? Second, the church is not the player it should be. This is due to problems on all sides. State agencies, once again because of their regulations I would suspect, feel that they cannot use religious groups, use churches to assist in facilitating integration. The "separation of church and state" is instituted in the lives of persons with disabilities. It is actually foolish to think it might be somehow otherwise. How would regulated people with disabilities, regulated by regulated professionals be expected to do anything approaching natural or normal? For normality to come to the lives of those who are regulated, regulations have to be removed or limited. And then, the church has to step up and be seeking out those who need unregulated, natural friendships. In my own life, I want to be able to stay up too late and be tired the next day if I want to. I want to eat too much if I want to. I want to drink too much coffee if I want to. I want to go places with friends when I want to. I want to be in the community when I want to. I want freedom, in other words. People with disabilities, by virtue of the fact that they have a disability, particularly an intellectual disability, loose their freedom. But the loss of freedom needn't be that way. The more programs are administratively convenient, the more freedom is lost. The more lives are regulated, the more freedom is lost.

What is needed is to step away from regulated lives. More "free agents" need to be in the lives of people with disabilities. People who can go off the reservation in terms of offering the natural relationships and consequences of choices that the average nondisabled person experiences. I am so damned tired of people being told what they can or can't do (can't have a coke, can't walk around, can't talk), having their behavior managed as if they were a child, and expecting me as their free agent friend to participate in behavior management by restricting either my interactions or the things I give to the individuals. I am damned tired of people being regulated for no other reason than the convenience of care providers. I am also tired of care providers who want to move toward normalcy being regulated out of offering regular lives, and into the creation of some morphed, prison like, restricted, unnatural life designed for people. In case you don't know, the life created by human service professionals, me included, sucks in comparision to typical, regular lives. I personally do not want people to try to create a life for me that is dependent on boneheaded regulations put together by some politician or beaurocrat. Just leave me alone as much as you possibly can. If you must interact with me, be my professional, but also be sure that I have real friends as that is what I need to have a fulfilling life, perhaps even more than a trained human service professional. And finally, professionals, think outside of the freakin box! If you are not interacting with people with disabilities, befriending them in your personal life, you are failing them and the society who trained you. That society desperately needs you to step up for the betterment of those whose lives have been devalued by the regulations they live under and the very regulated people who serve them.



Unknown said...

Wow! Interesting post. I’m glad that that light came on this morning =) Up until now I never knew all of the limitations and regulations that were placed on socials workers and case managers of individuals with disabilities. You made a very important point on how these individuals are the ones that are most capable of helping individuals with disabilities feel like they are a contributing part of society, yet that are forbidden to do so by these rules. It is inevitable that these case workers and social workers develop relationships with these individuals, but what blows my mind is that they are not allowed to develop a genuine “friendship”. This is part of their protocol. How on earth do they expect to help these individuals in need when they are trained to be emotionless robots? They are trained to see every case as a “job” or a “service” as oppose to what it truly is, fellowship. I think that the most interesting and intriguing point you made was the fact that normality will never be part of these individual’s lives unless regulations are removed. This is what it all comes down to. You also stated that more “free agents” need to be in the lives of people with disabilities. I agree. Some people don’t realize the power of friendship. They fail to realize how a bond between two individuals can truly make a difference in the way they view the world. This is what these regulated workers are lacking.

Anonymous said...

So this leads me to the question that every well-intentioned human service worker asks... "Am I part of the solution or part of the problem?" When I ask this question purely from the perspective of a human service worker my answer is that I am a little bit of both. I am part of the problem because I am condoning the type of regulated life that you write about in this post. On the contrary I also feel like I am part of the solution when I am fulfilling my calling to minister to the health, safety and social needs of vulnerable adults.

When I answer the question from the perspective of a pastoral counselor/evangelist... I think I am part of the problem. Why? Because I am only serving crumbs, rather than meat and steak. If human services were controlled and funded and staffed by local churches then we would be giving them a full course meal... that is meeting their health & safety needs, their social/friendship needs and most importantly their for need for a born again relationship with Jesus Christ and an individualized method of growing in that relationship.

Tugging at my heart is the development of a nationwide inside-out change of the human service system as we know it. Then perhaps we will be able to live without regulation, on this side of the fence as well as on their side of the fence.

pete said...

Professor Mc Nair, this blog was quite sad to read. I find it unsettling to think that the law can dictate how a person interacts with the world around them, and in some ways are bound by rules and regulations. How does the world ever expect those who need assistance in their life to be happy while they are not allowed to feel interactions with others who live and work among them. It is like a trade off. I will provide you services if you do not ask anything of me. How wierd is that. I believe that as we interact with others in the world and socialize in the workplace and make lifelong friends because we want to should be available to all people's regardless of circumstance or disability, or what the government says. In a way these individuals are being read their miranda rights not even having committed a crime. It is plain wrong!!!

Anonymous said...

So many quoteables in this article. Applies to all of us since we are at best the "not yet disabled."

Anonymous said...

I am disabled because of a head injury. It is really hard to establish relationships with anyone.My Drs. have said it is good for me to be out socializing and not sitting at home isolating.
I try but I at times don't feel like I am emotionally strong enough to take it.
I thought going to Church would be a good place to start socializing. I found that this was the worst place to start. To many people expected me to be together in everything I do and say. I have aphasia and am impulsive at times. So, I am left to hang out with non-christians who accept me for where I am at.
Yesterday I was in a waiting room where people in leadership from my Church were sitting. They were talking about some lady who is "a bubble short" due to some neurological problem. It was really uncomfortable sitting there listening to them.
I actually find Christians to be the MOST intolerant of people with disabilities.

Jeff McNair said...

Anonymous, your comment breaks my heart. I wish it were not true. I can only ask that you not write off a relationship with God because if a failure of his church. May God bless you.
Jeff McNair

lauren said...

This post was hard to read for me, after meeting the people that you have brought to class my view of people has changed. I never had met someone with disabilities and never knew what to think or expect. After meeting them I realize, they are people just like you and me. After reading the blog I relate it back to the stories you tell us in class or the three wonderful people you brought in to open our minds. They have the right to be befriended by anyone. If the government is not letting people have a relationship with them because they work with them that is wrong on so many levels. The people who care and work with the disabled choose their jobs because they must enjoy their work to some extent. I know that’s why I picked the teaching field. So to be told I you couldn’t see these people would be disheartening. It’s people like you and your wife who make a difference and prove that something can be done. I’m blessed to have taken this class and am glad I’m learning so much to change my outlook.

jennifer said...

i agree that there is too much regulation and that those who actually want to help those inn need are often discourage because of all the red tape that they need to go through in order to help. I understand the regulations and it is supposed to be inthe best interest of the person. i often do wonder what goes through a persons head when the only one's who hang out with them are those who are being paid, do they feel that if there was no money or funding they would have no visitors or anyone to visit them? There should be some sort of program that would have volunteers help the disabled and not be paid but they could earn credits toward a vocational school program or toward some sort of other program. the people would still get visitors but they would be doing it because they want the credit not just because there is a check waiting for them back at the office.

Anonymous said...

It seems to me that those withindividuals are at a disadvantage not only from there diabilty but the system. The laws and the way the organizations are set up make it even harder for them. This segregates them and doesn't allow them to have an honest interactions and friendships with people. It is realy quite sad.

Arthur Seale said...

When I moved to Oregon, I really missed hanging out and having relationships with individuals with disabilities. I would see individuals with disabilities, but they would always be supervised by their caregivers. Being an older man, I knew that if I approached or displayed friendliness, I could end up explaining myself to the police.

I instead signed up (with fingerprinting and criminal background check) to volunteer in the Bend Metro Parks and Recreation Special Recreation program. I spend about 35 hours a month chatting, relating, and being friends with intellectually disabled adults. I had to become "official" to even hang out with disabled adults.

I now have been hired as a personal caregiver for a 16 year old boy with autism with aggression. The clearing process has been going on for 3 weeks has is no where near being done. A female family member was cleared in 4 days.

I am really looking forward to spending time with the young man and getting to know him.

Anonymous said...

I recently started the Disability Studies program at CBU and it didn’t take me long after starting, even before reading this blog, to realize that I am guilty of this very thing. When encouraged to spend time with an individual with a disability, I sadly realized that all the people I know with disabilities have been limited to those I have worked with professionally. I do think as professionals we are conditioned to this way of thinking but this is clearly no excuse. While many of the regulations (background checks, etc.) have been put in place for the purpose of keeping the individual from being taken advantage of, it doesn’t explain 1) why people with individuals are not given the opportunities to choose their own friendships, and 2) why professionals won’t befriend those they come to know. Agencies recruit volunteers and interview potential staff without any regard to input from the person for whom the relationship is being arranged. A recent article I read addresses the satisfaction that comes from consumer choice vs. professional choice for personal care attendant—makes obvious sense! Who knows a person’s like and dislikes better than the person themselves. We all know that if you chose a person you thought I would like and said ‘here’s a friend for you’, that relationship would not reach the same level of closeness that one can gain from the person that was casually met and from which a friendship eventually grew. Additionally, by not taking our relationships with the people we work with beyond the professional level towards forming a friendship, we also cause them loss (not to mention we miss out on something great). If they are only allowed relationships with professionals then in a sense we become their only ‘friends’ and so when we move on to new career choices then a relationship possibly perceived as something of meaning, quickly becomes evident was ‘just part of the job’. I’m sure we’ve all experienced, at some point, the disheartening realization that someone we thought was our friend is really not a friend at all—unfortunately this is not an occasional occurrence for people with disabilities but a consistent one. It is a result of the regulations that are placed on them by others and while I may not be able to change the regulations, I can change my way of thinking and then put my thoughts into action! As part of the church, I can step up and be the one that provides opportunities for people with disabilities to choose and develop real friendships, simply by being a friend. To have a friend, I must be a friend.

C Merrill Kittelson said...

"Standing on the Backs of Those We Serve" What a strange title for a blog post. However, before you write me off as a lunatic... please let me explain further. There are many, many choices that each person makes throughout one's life. Marriage, career, college, etc. One thing that I have noticed while in the disability field is that many use it as a "stepping stone" to another career. This is not in an of itself an immoral choice. In fact I think most view it as quite removed from morality. Many see it as just a way to get from one job to another. There are many jobs like this... both within the disability field and elsewhere. What I see as the problem with this is that many don't realize how important of a job it is to care for those with developmental disabilities. In fact, I think it is an honor to be able to have this job. Many of the individuals living in CBRF's and going to Day Programs... have very few long-term relationships with the staff members that care for them. Even when there are long-term relationships... there is always more turnover in the field of direct care (as compared to many of the other fields).

Changing this pattern is not the job of the Human Service Agencies that provide the services. Many of them do a fine job at selecting quality, committed employees. Instead it is the job of local churches. Think about this logic for a second. The reason why turnover is so high in direct care jobs is plain and simple... it is usually low-paying with odd hours... and there are sometimes challenging behaviors that staff have to deal with. With this being said... consider the role of the local church. They are supposed to be providing for the needs of the widows and orphans and the outcasts of society. If they were doing this... then individuals with disabilities would have many more long-term relationships.

There is a catch to this. If you are reading this blog post and getting irate about how the church is not doing its job... go look in the mirror and then at 1 Corinthians 1:2 "To the church of God which is in Corinth, to all who are called to be God's holy people, who belong to him in union with Christ Jesus, together with all people everywhere who worship our Lord Jesus Christ, their Lord and ours." If you looked in the mirror and you saw someone that was called out in order to belong to Christ and are now in union with him then you are the church that this verse is talking about.

With this being said... we need all Christians, young and old, poor and rich, rural or suburban to stand up and find a person with a developmental disability to befriend. If we did this, even in a small way, it would make a big difference in the lives of those with developmental disabilities.

Jeanette Stonecipher said...

Jeanette Stonecipher
Wednesday, March 03, 2010

Dr. McNair,
My husband Chris worked for an agency close to 4 years caring for adults with intellectual disabilities in group home settings. My husband always complained to me that although he had grown strong friendship feelings for some of the adults he cared for, he was not permitted to have any personal relationship outside work with them. My husband always believed this was unfair and he always found a way to do nice things for them anyway without his supervisors knowing. Chris told me that he couldn’t even buy his clients a soda because the agency says that is taking advantage of the clients’ interest. The company claims that clients may get the wrong impression that the workers may expect something in return or that they don’t need to bring money because their caregiver will give them what they need. He was always respectful and understood his role and was aware that some of his clients could not distinguish friendship from caregiver. I guess you could say that he was a rebel or just went against the grain because he knew what is right. He always said “How can we expect or clients to make friends when were not allowed to be a friend to them too”.

Chris spent more time with his clients than the clients’ own relatives. I recall Chris working late even though it wasn’t his shift to take his clients to movies or out to dinner. He was always determined to help them foster new friendships and reconnect with old ones. He knew that most caregivers had the same feelings and done things out of the kindness of their heart as long as it was left unsaid. Chris retired in October but still has friendships with some of his former clients. He had two over for lunch and has visited with several others since.

Chris Stonecipher said...

I my former line of work, there were even instances where I was not allowed to ask a client if they wanted to go to church because it was a leading question into something they may not want to do. Many of my clients had severe intellectual disabilities and had never experience what it is like to go to church and build a relationship with the Lord and loving church members. I can't say I regret working with this company as it gave me different perspectives but as a father of three children that have autism, I could not work as a follower but as a leader in Christ. I asked anyway even if it meant losing my job.

Anonymous said...

I believe that this blog really does hit the emotional reality that is never said out loud. Disabled people should be able to live and have normal lives that all of the rest of us get to have every day. All people who work with disabled people have regulations of what they can and cannot do with that disabled person. The question is why they can’t have the same regulations as normal people. How is that going to hurt them? There needs to be more people to step up and be apart of these peoples lives. Yes the are care providers, but I agree they only do that because they get paid. If I was around people that were paid or have to hang out with me I would not be appreciated or felt loved. Real love would be because they truly want to be with that person and love them for who they are.

Most regulations seem to been not in the favor of those who are disabled, but for those who are working with the disabled. Come on now, who should the focus be on, really, it’s a no brainer. The more regulation the more freedom is lost. This is true. They should have the same freedoms that we do. Natural relationships need to occur. Restricting interactions need to go. The more we try to push for normalcy the more we are actually taking away their freedom. When is this going to stop and go in the right direction? When are people who have disabilities going to decide what they want for their lives?

George said...

I really enjoyed reading this article. This whole topic is very interesting to think about. The way that the social work organizations go about doing things don't make a whole lot of sense. The social workers' jobs are completely revolving around spending time and helping people with disabilities. So it would seem almost encouraged for them to learn more about the people they are being paid to work with. And the best way to learn more about anything I believe is to spend time experiencing whatever it is. In this case, they are being paid to work with people with disabilities, so they should be encouraged to spend any extra time they desire to spend with people with disabilities. I really like your point you made about if there are any people that would best be able to help people with disabilities get involved in the community, it would be these people. All that extra time with people with disabilities outside of work could do is develop a better worker.

Unknown said...

Inland regional Center has a policy, as a case worker I am not allowed to have a personal relationship with the consumers from Inland Regional Center. It is considered a conflict of interest. It is a misunderstanding that we are not permitted to interact with people with intellectual disabilities. We are! We’re just not allowed to interact with a person with a disability who is an IRC client. Yes, we are regulated. However, I understand why the agency restricts us from having these personal relationships. Just like psychologists are restricted from having a relationship with their patients. So are we! We must maintain that professional balance. In my caseload, I’ve had a few of my consumer’s family’s invite me to their home for birthday parties, but sadly I have been forced to turn down the invitation. Hypothetically, I don’t want to get caught in a situation where a family member becomes upset at me for not getting them a service they requested; an authorization of service is not up to me and sometimes it is difficult for parents to understand this. I hope before judging IRC workers, people understand that when you’re working in the field, it is for the best not to establish friendships with our consumers and their families. It is best to keep the relationship as strictly professional. Unfortunately, I had to learn this the hard way, but just because I’m restricted from establishing relationships with my consumers doesn’t mean I will not establish relationships with people with disabilities outside of work.