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

Sunday, January 04, 2009

6:00 PM

Over the Christmas holiday, Kathi and I did some shopping and bought a bunch of gifts for friends of ours who live in a couple of local group homes. The one home I visit regularly, the second not as frequently. Anyway, we went by the first home, getting there at around 6:00 PM, and imagine our surprise when we were greeted by two workers who told us that all the men who lived there were already in bed, asleep. That implies that they were in bed for the night at 5:30 I would guess. We were quite surprised by this. Why do 30-50 year old adults go to bed at 5:30 PM?

I am sure that I do not need to supply an answer to this question. I am not sure what time they get up in the morning, I would assume very early, but it certainly seems a strange schedule to keep. Where do adults with severe intellectual disabilities learn to keep a schedule that is different from 99% of the adult world, and different I would have to suspect from any schedule they had while they were growing up?

I also have to say that the group home is a good one. The directors are very caring people, I believe, who generally have the best in mind for their clients.

One of the benefits of church involvement in the lives of persons with severe disabilities is that you get to see what goes on in group homes that typically no one would see other than those who run residential settings or check for compliance. The extra set of eyes cannot help but ensure that things are as they should be. I will often look to see that their possessions are still there and have not disappeared. I am interested in how they are treated and what freedoms they enjoy in their lives. By developing a relationship with those in charge, I can develop the right to ask questions about care. For example, because of involvement in the group home I have had over the last few years, I will be asking about the going to bed at 6:00 PM. Now I do not expect that anything will change...it is not normal, but it is not abusive and the residents seem to be happy people.

But presence can do a great deal should abuse be occurring in a residential facility. It is a simple thing that a church/disability ministry can do in the name of social justice. You are looking out for those who haven't the ability to protect themselves and wouldn't know what to do if they were experiencing some form of abuse.

But 6:00 PM also shows something else about the lives of persons with disabilities and the power of service providers wield over them. Therapy is power whether it is delivered in a hospital or in a group home. Lives are managed for the ease of the managers not to facilitate the freedom of the managed. Remember that if you are a person who works in human services. I always tell the wide eyed, idealistic teachers that I train that far too many educational decisions are made on the basis of administrative convenience not on the basis of pedagogy. It is just a fact. I don't like it, but it is a fact. I, however, encourage my teachers to fight for pedagogical decision making, particularly when they have tenure...we also always discuss what is worth loosing your job over when you buck administrative decision making on the basis of convenience. That is fighting for social justice. You won't be celebrated by those you are inconveniencing, and you will get the reputation of being a pain, but you will be able to live out the passion that motivated you to get into human services in the first place.

It should also be a part of the motivation which gets you into disability ministry. Why do you think that ministry to persons with disabilities has been so long in coming? Does decision making on the basis of administrative convenience also apply to the Christian church? Unfortunately it too often does.



Pilgrim said...

Another action Christians can take is to volunteer to attend IEP meetings with parents of children with special needs. Simple presence, again, changes the power dynamic in the room.
This is not a huge time commitment, but would likely be perceived as significant love and support by a parent on the receiving end.
It could also make a great difference for the child involved, even if the support person just showed up well-groomed, behaved with courtesy, and didn't speak during the meeting itself.
In addition, this is the way for the church to start getting a free education on what goes into working with and parenting children with special needs, as well as a more intimate look at the needs of an individual child.

Anonymous said...

Julie quoted from this post in a comment on my blog today.

I agree with: "Lives are managed for the ease of the managers not to facilitate the freedom of the managed." Most often.

I'm not sure I understand what you mean by the sentence previous to it.

I have not chosen (allowed myself?) to think of my work as a ministry. Being a therapist is my calling, but also has been an earned income.


Anonymous said...

Too many things are done for the "convenience of management," including providing services for students with disabilities and the rights of residents in group homes, other residential facilities freedom to do things, like attend church.

I tilt at both these windmills with growing frustration. At work, I am literally told, it is my responsibility to recruit staff to fill the vacant positions in my classroom; currently minus three. We also reach out to group homes in our area as part of our effort for the start up ministry for disabled adults in our church with negligible response.

I face more than one situation, now, where I may have to risk my job. My frustartion isn't with that idea, but with my exclusion from the opportunity to even broach the subject...tick, tick, tick.

For our ministry I am frustrated by how hard it is to establish new relationships in our outreach. We invite and no one responds. How do we communicate our sincerity, openess and acceptance? We just want to begin by making new contacts and can't get that first date.

Anonymous said...

I believe that for some reason older people do tend to go to bed earlier and wake up earlier, my dad for instance is in bed every night by 7. I think it just has to do with the body being tired and ready to relax. Now do I think that this may be happening for the convenience of the workers? Absolutely, I do not agree with that but i'm sure it does happen. I don't think that it's fair to these disabled people to be forced into bed earlier so the workers have more free time to themselves. I believe it is important to speak out and get stuff like this taken care of.

Anonymous said...

I work with handicapped children every day. They range from preschool through high school ages. Most of these children will never be able to carry on a normal adult life. They will never be able to care completely for themselves. Some of them due to mental handicaps and others for physical handicaps. Does this make them "inferior" or "unworthy of kindness and love?" Absolutely not. However, I can say with knowledge acquired from extensive personal experience; they can be quite stressful to deal with. Not necessarily because they are difficult themselves but their handicap(s) create much mental and/or physical stress on a caretaker or educator.

I love my job and I love making an impact on these children. Few things are more gratifying than a child who seemingly can't be reached embraces you and reacts to your presence.

It may seem so simple a thing to take care of someone with disabilities but it is absolutely not. The age of the handicapped person notwithstanding, it is very taxing on a caretaker. I deal with dozens of various handicaps every day. Most of which, could not be dealt with by an untrained person.

While I agree that churches, and society in general, need to reach out to handicapped persons, we need to be realistic. It takes many resources to deal with handicapped people. Even someone with a mild handicap can take up a great deal of time. The percentage of the population handicapped people represent is quite small compared to the amount of time and resources they require for care.

My grandfather had a full stroke almost ten years ago. He is now paralyzed on his left side. He is six feet two inches tall and weighs a very thick and muscular 240 pounds. He cannot walk alone, he cannot go to the restroom alone, he cannot get into and out of bed alone. He cannot do anything alone. I love my grandfather more than I can say yet I am unable to spend nearly as much time with him as I would like. I have young children, I have a job, I am a full-time student. I have a busy life as most people do. I have someone I love who is severely handicapped and I am unable to care for him. How are we to expect others to care for strangers? This is an unrealistic expectation. I admire professor McNair for the time he devotes to handicapped people. He is familiar with the handicapped community and it's citizens. Most people do not have regular access or exposure to handicapped persons. This is through no fault of their own. The worlds are separated as a result of necessity. Without my job, my exposure to handicapped people would be limited to the occasional group home who takes a chaperoned journey to the mall or the rare person in a wheelchair that I see in a grocery store or at Disneyland. Without my job, my exposure would be like everyone else's - limited.

In general, I think people who are able, care for handicapped people in whatever capacity they are capable. There are, of course, exceptions to every rule. I believe most people exposed to the handicapped community have an active role in one form or another.