Lumping together elder care and people with disabilities: a poor fit

At my parish , there is a caregivers group. It focuses mostly on caregiving of parents, although all are welcome. I spoke to the group on issues they face with elderly caregiving and shared some of my experiences as a person who both has a personal assistant and an aging parent.

One thing became massively clear to me: the issues concerning elder care very significantly from those facing people with disabilities who need the services of a PA. I really felt, which I relayed later on to the woman running the group, that there were others better qualified to talk about elder care. I gave her a few names of folks who work in the field.

Our social programs have tended to lump together the services for both elders and disabled folks. It is more cost effective to do so. But it’s incongruent. Services geared toward the elderly fulfill different needs than those created for people with disabilities. Our needs are different. Yet we still put seniors and the disabled together in federal housing, meal programs, transportation services and the like.

This has stalled progress in many areas for people with disabilities since, aside from the personal assistant care programs, we lack social programs designed for their needs. At present, a social worker writes down that you’re receiving services from such and such a program for seniors. Whether those services meet your needs or not, it’s on paper and that goes to decrease the hours you may receive from a PA. Worse yet, if you “complain” that the services don’t meet your needs, the pen comes out and you’re deemed “noncompliant.” The prevailing thought seems to be that you’re turning down help and assistance if you point out that the elder service organizations don’t meet your needs.

The head of one local organization run for the aged really got perturbed at me when I explained that their services didn’t match my needs. The woman began to argue with me, telling me that they “help other young people with disabilities too”. I told her that every time I asked for help, she told me it was something they didn’t do . Yet even though I received no services from them, they would call and insist I be home to accept a “senior package” which contained items for seniors or a visit or some such thing. They never came when scheduled but would call and reschedule more times that I had to be home for these things, telling me “they” were busy. Whenever this happened I would look down at my stack of work and sigh. I asked her if she could just take me off the list for the packages, etc. and she adamantly refused, saying it would cause them too much work to “treat me differently”. She just couldn’t see things from my point of view- and ended the conversation by saying I would be struck off the list if I couldn’t go along with the packages. That was fine with me! Clearly I had become the noncompliant patient to her.

There is a vast difference between a medical model of care and a consumer model, which disability advocates have fought for and incorporated in personal assistant/independent living programs. A medical model of care sees the recipient as a passive participant. Think of a nursing home situation where others run the schedule and tell the patient what his/her needs are. Compliance is the goal along with efficiency. This model is behind most elder care services to date. (I bet there are lots of seniors who don’t like it either.) They tailor their services and you receive them. You have no input into them.

In a consumer model of care which is used in the Personal Assistant Program I am in, the (disabled) consumer is empowered to direct his/her own care. There is a structure in which an evaluation is done and a task list is drawn up, but within those guidelines a consumer acts as the employer of the personal assistant and directs the care.

You can see the vast difference in these approaches. Supplementing hours to a personal assistant program with services from a medical model just doesn’t fit. There are legitimately different needs for seniors and disabled people and services designed for the elderly should not be forced upon people with disabiliities when they are inappropriate.

Copyright 2007 Ruth Harrigan

The Naysayers

We all know them. People who tend to be negative, who have difficulty thinking outside of the box, who go around, consciously or unconsciously, squelching dreams, ideas and visions.

I call them the Naysayers.

I’ve encountered a few of them in my own life and many more in the lives of the people for whom I advocate. Many of the phone calls I get are peppered with accounts of the effecct of Naysayers in the lives of pwd. From the kid with cerebral palsy trying to get his own apartment to the twenty something blind woman highly degreed and encountering employment discrimination, their stories are the same. Naysayers try to squelch their goals.

I tell them one simple thing: don’t let them. Don’t even listen to the list of reasons why you can’t do things. Keep being resourceful and creative. For every Naysayer, you will meet someone who supports your goals.

I can promise you that – even if sometimes that person has to be the one you look at in the mirror.

Here’s how to spot a Naysayer. Unlike someone who is an Ally and is trying to present sound suggestions or a balanced view of things (i.e. a reality check), their remarks tend to be one sided and close off all opportunities. They say things like:

“You can’t do that!” (a variant: “You shouldn’t do that!)
“Do you think you’re going to be the first (quad or fill in the blank) to pull that off?”
“You need to understand that not being able to (fill in the blank) is part of being disabled.”
“You’d be easier to be around if you would just accept that this is what is like living with a disability.”
“It’s selfish of you to want to do (fill in the blank) since it creates work for everyone else.”
“It would be so much easier if you would give up on (fill in the blank). Can’t you see that?”
“I hope after this last disapointment you see that you’re never going to be able to (fill in the blank).”

And so on.

Spotting Naysayers and dealing with them, whether they are teachers, employers, doctors, nurses, colleagues, family members, friends or others, is a great step toward removing barriers that will keep you from achieving what you want. Once you can see the difference between someone who is an ally and someone who is a naysayer, your support system will grow and nourish you no matter what your personal goals are.

Copyright 2007 Ruth Harrigan

Mobility: The board game

After spending the past six weeks trying to figure out ways to stay mobile due to my shoulder problems, I’ve come face to face again with how tenuous a position all of us with disabilities are in when our equipment needs changing.

I finally decided that I need to put all this information into a format so others can benefit from it. And what better way to do that than in a board game?

I considered other board games while I was planning my game. There’s the ever popular Monopoly and the tempting title Mobility Monopoly. Players could start off without any mobility equipment except, perhaps, a cane and then as they play acquire rollators, scooters, manual wheelchairs and power wheelchairs (not necessarily in that order). They could build accessible houses and buy other properties and put in ramps, accessible bathrooms and such.

But I ran into a few problems with that design. Because acquiring all that equipment just wouldn’t help the player make money and then he/she would lose the game.

So I thought of the game of Life. You start out in a car and proceed along, picking a job and getting married and having kids. I think this game fits best although in my game ( called No Mobility, No Life) players would only be able to move when/if they had the mobility equipment that they needed. Otherwise, just like in real life, players have to stay home. That would be an area at the beginning of the game marked HOME.

You couldn’t leave HOME until you successfully rolled the dice and got lucky numbers in one of three areas: darn good insurance coverage, lucking out on finding a mobility device on ebay or winning the lottery. Then you can get that mobility device you need to move forward and play life.

I think that’s a more realistic start to a game about mobility. Because the main thing I’ve learned about mobility is that with the way our system is currently designed it often comes down to a roll of the dice before you can even get out there to have a life.

Copyright 2007 Ruth Harrigan

Depersonalizing Discrimination

One of the biggest disability stressors people talk to me about in my advocacy work is the difficulty they have handling incidents of discrimination. Discrimination ranges from subtle behavior and language to outright exclusion. Somewhere in the middle there is a wide variety of things that happen that you have to decide whether to tolerate, act upon or handle with a sense of humor or other skill.

I’ve had many people come to me who begin to feel a sense of erosion of their self worth due to repeated incidents of discrimination. They ask “Why is this happening to me?” instead of reframing it to a wider social picture: “Why are people with disabilities being treated this way?”

One of the skills that I emphasize to people with disabiliites is learning how to depersonalize discrimination. Basically it means that you take a step back and remember that the party who is discriminating against you because of your disability would act that way toward the next person who comes along with a disability as well. This helps put the incident into perspective and can keep it from being as damaging to your self esteem.

There is a form of discrimination that happens where it is very difficult not to personalize discrimination. Some people who discriminate against disabled people, particularly in groups, consciously or unconsciously will personally attack characteristics of the disabled person. They rationalize their refusal to accommodate the disabled person or include the disabled person by picking on personal traits of the person unrelated to the disability. In my advocacy work I use the word bullying to describe this behavior.

This kind of exclusion is very hard not to personalize because it is aimed at your perceived faults and the attackers are careful not to say anything about your disability. In fact they are extremely politically correct. However, it is very important to learn to spot it. When a group of people does this to you and it results in social exclusion, it’s important to take a step back and assess if it’s discriminatory behavior.

Why does this happen? Sadly it’s easier for a group to find fault with someone whose presence requires adjustments than to make those adjustments. It’s easier to just make them go away. It can be very difficult for a person with a disability to undergo an experience like this. The herd mentality of groups, bullying behaviors and negative attitudes toward disability combine to create a toxic atomosphere.

For example, I had someone come to me who was attending a women’s social group for several years. The meeting place had to be moved because of her wheelchair and she noticed that the label “selfish” and the word “entitlement” started to be tossed around by some of the group members. Over time the labels continued to fly, such as “arrogant” and “difficult”. By the time she talked to me, she was in tears. She told me she never had an experience like this in a group before she became disabled. This alerted me to the fact that this might not be a case where the woman really did have social skill issues or personality problems but was being discriminated against. Members of the group had effectively closed her out by labeling her – but never using the disability directly to do it.

I told her that her best option was to depersonalize the discrimination and reach out for objective reality checks, which she already started to do by talking to me. It’s important to consult with members of the disability community to get feedback and do a reality check with people you trust and who know you well to see if your assessment of the situation is correct. You then need to consider your options in this situation. A lawsuit may be appropriate , e.g., if it’s happening at work and your career is at stake. You also need to assess if it’s worth putting yourself through any more of this behavior as well as what you can realistically do about it. Balancing these two considerations is crucial.

Since this group was directly related to her professional career, the woman chose to stand her ground, depersonalize the behavior and hang in there. Once she stopped personalizing the behavior, she reported that it was easier to cope with the group dynamics and shake off much of the negative behavior. By doing this, she not only stayed in the group but noticed that the dynamics improved based on how she reacted to the behavior.

This is not always the outcome in these situations, but knowing how to depersonalize discriminatory behaviors is a good skill for all of us to have. It can be a powerful tool against many forms of subtle (and not so subtle) discrimination.

Copyright 2007 Ruth Harrigan

It’s a Beautiful Day in the Neighborhood

Childrens’ shows like Mr. Rogers and Sesame Street usually show a neighborhood and try to teach kids what I call sandbox 101- how to get along with each other- through the neighbors. It’s a great learning tool for kids but I do think adults should have a show where they can get a refresher course every now and then.

And I think we could use an extra credit course on the topic of being a neighbor to a person with a disability.

I have had good experiences getting along with my neighbors. When I was growing up, my neighbors were like second, third and fourth sets of parents – right around the block. In Michigan, my neighbor who was elderly became a good friend. When I moved back East, I got along well with my neighbors.

I always took care of outside things like the lawn, would bring in and put out the garbage cans in a timely manner and do a neighborly favor. Going on a trip? I’d take the mail. Expecting a package? I’ll watch out for it. Need a babysitterin an emergency? That’s fine. Need help shoveling? No problem.

Then I acquired my disability. Suddenly I couldn’t physically do some of the things listed above. My relationship with my neighbors changed. I had to hire and depend on others to do the outside things – and sometimes the garbage cans were not brought in and out on the exact day but a day or two later. Hints were dropped – verbal and nonverbal. Things became tense .

Once I was able to develop over time better ways to get these things done, things calmed down. Talking about it also helped – although it took time. What folks didn’t get – and don’t get – is that behind closed doors, I was dealing with the same situation that’s outside 24/7. There were gaps in help due to limited resources.

But my neighbors didn’t know that for one simple reason: they never came inside to find out despite invitations.

This is a ticklish subject because by no means am I criticizing anyone, just pointing out that humans tend to judge what they don’t understand. It’s not a matter of making it someone else’s problem, but working toward understanding the change in circumstances living with a disability creates. I’m not trying to put anything on anyone or place expectations on people. For example, I’m not expecting my neighbors to help with my garbage cans on that one, two or three weeks out of 52 weeks a year when my help can’t come over. It would be nice, but I don’t expect it. I pay someone else. It’s just that it might take a day or two to get someone to do it on those rare occasions. What I’m asking for is a reasonable response to my reality – not a free ride.

As I watch other people with disabilities move into the community and deal with similar issues, I am haunted by one question:

Where is Fred Rogers when we need him?

Copyright 2007 Ruth Harrigan

When a man loves a quad

One of the negative attitudes toward the disabled I encounter socially is when I’m dating an able bodied man and someone assumes he’s doing it out of pity or some misguided reason. (I also hate when I’m dating a disabled man and people say we’re “cute together”. Oh please.) People with disabilities are not asexual. Nor are we “less than” in terms of a catch, if you must think of it that way. (I hate talking about these things. It reminds me of awkward high school dances.)

Both before and after I acquired my disability, I’ve dated able bodied and disabled men. I never thought of it that way – putting people in categories. I dated a guy in college who was blind so I learned about radar canes and braille and such. We loved going out to dinner and theaters. When I dated an amputee, I learned about prosthetic legs. They, like the able bodied men I dated, had their own way of doing things in life. I don’t see the difference if it happens to be about a piece of assistive equipment or a resourceful way to do something because of a disability. How is that any different from the able bodied man I dated who would only drive into New York city on one route and park in one parking lot? It was his way of doing things. Actually that was different – he was just being stubborn. But you get my point.

It’s very difficult to write about this. There are a lot of bad memories-like the times when I’ve been at a social function with an able bodied man and another woman sidles up next to my wheelchair and asks “How did you catch him?” and I smile politely until she adds “with you in a wheelchair?” Or the people who ask him – or me- intrusive questions like whether I can have sex. Then there are the able bodied boyfriend’s friends or family members who talk to me privately and suggest that I break up with him and not be “selfish so I don’t ruin his life”.

No, it’s not easy to talk or write about this kind of thing from the point of view of the person who is being seen as the deficit. Much of it is like a quick hit and run where you don’t even want to deal with the insurance company at all and prefer to take a hammer to the fender, bang it back in and pretend the accident never happened. But this behavior needs to be addressed just like other attitudes toward the disabled that continue to lurk around .

These attitudes come from a negative way of seeing the world – and disability. It says that a person with a disability is less than an able bodied person and a deficit as a partner. (When they refer to you as a “special someone”, they don’t mean it in a good way at all.) You might hold him back or, worse yet, “drag him down with you”.

Into what? Where are we going? Where is all this fear coming from and where is it all taking us? Not toward inclusion. Not toward a vision of the world where all people are treated with dignity and respect. It is up to us to work out the boundaries and issues surrounding our relationship – the give and take and the reciprocity. This is the same as it is in all relationships. For those who assume that an able bodied person will become a burdened caregiver, I can only say this shows an exquisite lack of imagination as to the myriad possibilities that can be worked out. It exaggerates the situation in a negative way.

And if I have to be the special someone to say this, I will : jokes, sarcasm, crude and rude remarks, busybody interference and other misbehaviors are not only ableist but disrespectful of my autonomy and the autonomy of the man who loves me – as a quad.

Copyright 2007 Ruth Harrigan

Asking for Help Doesn’t Define You As Disempowered

Sometimes as an advocate I work with clients who run into difficulties with the people they turn to for help. A client with a spinal cord injury called to tell me that a social worker was acting in ways that disempowered her, then told the client that she needed to be more empowered. Yet the client’s suggestions were ignored, her ideas were greeted with negativity and her efforts were, in her words, “useless”. She explained that she did her homework before she called the social worker to save time, but found herself put on the defensive instead and was frustrated.

I called the social worker up and asked her a few questions. She told me that this client asked for extra services and was ungrateful. She wasn’t happy that the client researched possible avenues to take and said clients “didn’t see the whole picture”.

I decided it was best to set up a three way phone conference so I could listen in on their interaction. The client did a fair to good job of being specific with her requests. The social worker continued to interrupt and challenge the client every time she attempted to empower herself. I could hear the client’s frustration growing. I let it go the first two times then chimed in and pointed it out the third time. I asked the social worker if she felt that the client’s suggestions were inappropriate and the social worker said no.

At that point I asked the client to hang up and asked the social worker to define the term “empowerment” and the social worker replied that it meant the client did not need to ask her for help and did not call her. Empowered clients, she told me, managed on their own and didn’t need referrals.

I can understand why an overworked social worker would want a caseload full of clients who fall into the category of appearing not to need any help. However, the worker clearly misunderstood what “empowerment” meant. Asking for help does not define one as “disempowered”. Sometimes we need to do that to get access to resources or information. This is a very different situation than a client who calls and tries to dump personal problems or responsibility.

After we talked about definitions, the social worker sighed. “I was hoping this empowerment thing would give me less work,” she admitted.

I couldn’t promise her that it would, but told her that communicating in a way that empowers her clients would produce independence in the client’s life. I also explained that if she helped clients resolve their problems, the client would stop calling repeatedly. To her credit, she agreed to give it another try.

Our second attempt at a phone conversation was much improved. The social worker obtained the information the client needed, emailed her with it and the client was able to take it from there. The client felt empowered and the social worker felt that the client used her time and resources in an efficient manner.

Empowerment does not mean that you never ask for help, but remembering to ask for that help in as specific and organized a way as possible is something you can bring to the table to help make these interactions mutually positive.

Copyright 2007 Ruth Harrigan

A Matter of Life and Death

In his opinion column, Russell Shaw tells us disabled folks to “get over” our “fear” of the right to die types. He writes:

“Could the real issue for some disability advocates be that ongoing life experiences have convinced you that able-bodied citizens feel you are “in the way,” and that right-to-die types have as the ultimate goal more tools to get you, our disabled brothers and sisters, “out of the way?” and goes on to state that he sees our stance as a bit paranoid.

I’m glad you asked that question, Russell. Too bad you went ahead and tried to answer it before talking to any disability advocates. But let’s talk about the real reasons why people with disabilities say they want to die and then let’s take a look at if they really want to die – or live. This is the distinction that many who use the “p” word don’t “get”.

Over the years I’ve worked with many people with disabilities who tell me they want to die. There’s no doubt that these cases have one thing in common: they did not want to die because they were in physical pain or facing a terminal illness. They wanted to die because they did not have the means and resources to have a manageable life. Some wanted to die because they were newly disabled and were going through depression. Others feared being a burden to relatives. Some lost all of their money and were unable to work and find a job.

Some of the disabled people who approach me who say they want to die tell me that they have no quality of life. Simple things like having meals on the table are a problem. They may survive by eating bags of potato chips. It’s a John Smith type of existence: if you can’t cook or prepare a meal and there’s no one to do it for you, you don’t eat. Or they may go without showers for weeks at a time. One woman I know doesn’t get her laundry done for months on end. There is a shortage of both funding and availability of home health aides so many people with disabilities live like this. It’s behind closed doors.

Even though this is a reason why people with disabilities want to die, some people respond by saying that if you “can’t manage by yourself, you should go into a nursing home.” . That’s even worse. It’s a loss of autonomy and freedom. To many disabled people, it’s the line that is crossed when suicide becomes the choice and they tell me “If that ever happens to me, I don’t want to live.”

Then we have people who say they want to die because they cannot get out of their homes because there have been In Home medical equipment restrictions or they can’t afford medical equipment. Their wheelchair breaks and they can’t get another one so they are immobile. This leads to depression. Perhaps their caregiver is an aging parent who can no longer care for them – or dies. All of these changes make disabled peoples’ lives unmanageable and can make suicide look like a way out.

People with disabilities are far more vulnerable to right to die laws because they can be talked into suicide under the guise of compassionate care (or whatever politically correct term du jour is being used). Here’s where we get into the supposed paranoid part – whether anyone wants to admit it or not, due to the cost of care it is cheaper and far easier to talk a person with a long term disability into legal suicide . “Sign here- and all those logistical problems go away.”

What needs to be understood is that what these people with disabilities who ask to die are looking for are the resources so they can live. We need a right to live movement, not a right to die movement. We need to solve this myriad of social problems, not provide an “out” for a vulnerable population that can be used by them and – yes- manipulated by others.

I find it sad that people like Shaw use their public forum to ridicule disability advocates. But I’ll be the bigger person here and suggest that a dialogue is possible. We need to address the erroneous assumptions out there in the public forum about our stand on assisted suicide vis a vis people with disabilities.

It’s a matter of life and death.

Copyright 2007 Ruth Harrigan