The Dangers of Judging Self-Determination With One Ruler

I’m always struck by how people use one ruler in life to measure all kinds of things. A ruler works equally well on any object. You can measure a couch or a thimble, a kitchen counter or a doorway.

But using one ruler to measure people is dangerous. It’s particularly harmful when it’s done to judge self-determination in people with disabilities.

Everyone’s situation is different. Disabilities vary, even with the same diagnosis, and support systems vary. Some people have better financial resources. Others have multiple disabilities. What one person does may show a great degree of self determination, while for another person that may not hold true. It’s sad that in our society we fail to recognize the efforts people do make rather than criticize what we don’t understand. It doesn’t just put down the object of our derision – it’s because our society is using one ruler.

It can be hurtful to have this done , whether it’s by a professional, such as a doctor or social worker, or a disabled or able bodied friend or family member. Words hurt, labels stick and self esteem is affected.

What strikes me from talking to pwd and reading their writings is how likely pwd are to have their self-determination judged. Society may deem some of us inspirational – if we meet or exceed their standards. But if we don’t, then the ugly labels start to appear – like self pity or lazy or ‘having a sense of entitlement’. Although it is sometimes true that a pwd needs to be motivated out of a state of inertia, flinging judgments at him or her doesn’t seem to be a great way to do this. And it turns pwd off. One person I talked to got to who suffered from chronic pain and was constantly criticized for not doing more eventually said to professionals “Chart this!” and rolled out of the room.

I’m all for self- determination. It helps all of us get through life. I just think we all need to remember that we’re not measuring objects, but people. And that takes more than one ruler. Our right to judge another human so harshly is yet another issue.

Copyright 2007 Ruth Harrigan

Don’t get “stuck” when you buy disability-related products

“I don’t think I will ever go in it again.”
–Eva McCracken, who campaigned successfully for a wheelchair lift at her local railway station, after it malfunctioned
-via Inclusion News Daily

For anyone wondering how such a thing could happen, I suggest you talk to a person with a disability – or the parent or family member of one.

We’ve all been there. We research the technology or assistive devices we need. We consult with OT’s, PT’s, doctors, other people with disabilities, perhaps architects and others. We find various forms of funding, save our own money, and put in applications to insurance. In the end we receive a product that is supposed to help us do what we need and want to.

And sometimes, even after all of that planning, things go awry. We might get a lemon. The design might be wrong. The product may be sound, but won’t work properly where it’s placed. Or, worse yet, we got bad advice from experts who simply don’t know enough about what they still consider a “niche” area – disability accommodations, access and technology.

After spending hundreds or even thousands of dollars, we may find ourselves owning a product that doesn’t fit our needs despite careful planning. There isn’t a ‘second bite’ at the apple with this. A custom made wheelchair that doesn’t fit your needs or a computer that lacks the technology you need although it was designed for you is a disaster to those who need these devices. And, in the case of the example above, a loss of confidence in the reliability of the product purchased can result in its disuse. Getting “stuck” literally on a lift can translate to getting stuck with a product!

So what can we do? First, know your rights as a consumer. Check out the available warranties – and return policy, if any – of the products you order, especially online. If you purchase through a dealer, check out their reputation through your network. Has anyone else bought a product through them? Is their service reasonably fast and consistent? Are they knowledgeable about the products they sell?

The same is true of any experts you may hire or consult. Not all architects, contractors or even medical folks are equal. Those who are “in the know” about what to buy and how to set up and fit products earn a good reputation – and a well deserved one. Word of mouth is especially important here. Networking through organizations can be of help here.

If you’re buying a custom product, make sure that your measurements are given to the dealer accurately. The same is true of the options you choose. Play an active, not passive, role in this process. Products that are custom built for you place an extra burden on you to be careful since you cannot return them if they are delivered to you with the specs you ordered. Mistakes on your part can leave you with a product that might be useless. If, however, a dealer makes an error in ordering with the specs you gave them, then you have rights. This means that examining the product upon delivery is crucial to make sure it’s in accordance with the specs you provided.

Finally, research the product that is recommended to you. Before you buy it, consider its track record for other consumers by doing some reading on the internet and talking to others. You’re not the only person buying the product (although it may feel like it). True, these products have a smaller market but it’s a market nonetheless. The “buzz” is out there if you do enough footwork. This may not be the time to save money, as tempting as it is, on a product that has a shorter warranty. Remember that if the manufacturer lacks enough confidence to give a warranty on the product, chances are you should pay attention to that as a buying point – and put it in the negative column.

None of these suggestions can guarantee that you won’t get “stuck” – but working with experienced people and purchasing reputable products with a good warranty go a long way toward preventing it.

Copyright 2007 Ruth Harrigan

Being a devil’s advocate isn’t as helpful as one might think…

Why not be an advocate instead?

When I talk or write about disability issues, some disagree with my point of view- even some in the disability community. That doesn’t bother me because the world is big enough for various opinions – and would be boring if it wasn’t allowed!

But I am prone to asking people what they are doing about the issues at hand during these discussions. I want to know if they put their “money where their mouth is” – do they spend their time and energy taking action and doing things – or are they just playing devil’s advocate with me?

Being a devil’s advocate, spending one’s time picking at advocates who are trying to change things isn’t very helpful. It’s particularly not helpful when the people doing it simply haven’t done any advocacy and don’t know the background or history of events.

So I ask them questions.

If we’re discussing access issues, I ask them if they report inaccessible places. Do they have the assistive technology they need to be productive? Are they able to afford medical equipment? If so, do they pass on equipment they no longer use or need? If we’re discussing employment issues, I ask if they mentor others with disabilities or take action on a community level if they’ve “made it” – if they are working at a job at equal pay. If we discuss the issue of home health care I ask them if they have family members who help and what they would do without that or when those folks age out? How much do they pay out of pocket for home health care and/or medical equipment? Are they aware of the staggering costs of these things for many- and the obstacles presented by them for many of our community members?

If they tell me they have a well paying job, their family members help them out, they don’t have time to report access issues and those other problems are things they can’t relate to because they’ve never felt comfortable around others with disabilities, I smile. This gives me the impression that they are playing devil’s advocate with me – while I’m trying to advocate.

Don’t get me wrong – I applaud those in our community who have “made it”. I’m happy to see people who are gainfully employed, have what they need to live productive and successful lives and give them credit for their hard work, resourcefulness and all that goes into that. But there is a danger in assuming that everyone else can do it, especially if it leads to playing devil’s advocate with advocates who are dealing with those who can’t do it in the present system.

Do I challenge people? You bet I do. I want to know what they’re doing- not for me and, to some extent, not for themselves – but for each other. Because when we help another disabled person, we’re helping our community. And that’s helping in a way that can’t be measured – and doesn’t have to be. This isn’t a question of spending all day on advocacy – but we don’t have to leave that as a job for others either. We can all do our part.

Copyright 2007 Ruth Harrigan