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Measuring Disability

During the years I’ve lived with rheumatoid arthritis I have been assessed and measured up and down—blood tests, joint motion, physical deformities, deficiencies, and limitations galore. And yet I cannot really say if any of it has actually been useful for me in living my life and managing my condition.

Sure, it helps to know my CRP as a tracker of my inflammation. But I am usually the one to say “I feel terrible,” then get the test done to confirm it. I don’t really learn anything new. I just get how I am feeling verified by a blood test.

Everyone has issues…

Let’s just say I don’t find the medical model of measuring disability very informative or helpful for my personal experience. What I mean by the medical model is the traditional medical approach of measuring patients by counting deficiencies or abnormalities from the norm (which rarely exists in nature). My experience in life is that no one I have ever met is a perfectly healthy person. Everyone has issues!

While a medical approach is needed for diagnosing health problems, I have not found it useful for managing a chronic condition. As my disease has progressed, medical model measurements have simply verified more damage. It is a method of documenting, not informing. This approach can be used for understanding populations, such as the damage caused by a chronic disease for a group of people. However, on the micro (or individual) level, it is not as useful.

Measuring my deficiencies is sometimes harmful…

From a psychological and emotional perspective, I have found the medical approach of measuring my deficiencies sometimes harmful. When meeting new doctors, physical therapists, or other health professionals during my care many have focused on these measurements, instead of the bigger picture. I have experienced these medical providers discounting or dismissing my goals because the measurements told them it was impossible. Yet, I proved them wrong and did not continue to use them for my care.

A concept of disability that I find more useful considers social and economic context. The Americans with Disabilities Act embraced this frame for the law’s definition:

The Definition of Disability

The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. This includes people who have a record of such an impairment, even if they do not currently have a disability. It also includes individuals who do not have a disability but are regarded as having a disability.

This approach to disability includes the idea that it may be temporary or lifelong, that an experience of disability may change, and that it can be influenced by societal constructs and perception.

For example, my rheumatoid arthritis affects many life activities, but with assistive tools and adaptations, I can still live my life fully with these disabilities. It means the measure of my life is not about deficiencies, but instead about solving problems through adaptation. Yes, I need to understand how my disease affects my abilities—so that I can understand these challenges and learn to work around them.

What I believe is that measuring deficiencies does not help me cope with living with the effects of rheumatoid arthritis. Rather, understanding what activities are important to my life and using this knowledge to apply tools, create accessible circumstances, or problem-solve to achieve these goals is what makes a difference in my life.

From a holistic approach, measuring deficiencies and assessing disability through this lens can be both harmful and unhelpful. However, understanding abilities and goals through the perspective of the individual can be revealing, and also support achieving what is important to the person during their life.

I think the medical model approach is outdated and limited. For a 20,000-foot level view of a large group of patients, it makes sense to understand broad categories of disability. But for supporting individuals with RA, I propose we instead turn the measurement of disability on its head and assess the unique individual through how their condition affects their life activities and creatively developing solutions to help them achieve their goals.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Eebtool
    2 years ago

    Afternoon Kelly-

    I so agree with you here.

    Lets come up with our own scale for measuring how our lives are going over all, taking into consideration the effects of the chronic illness of RA along with how we rate our days, how we rate our relations with others, how we rate our self as to how RA effects our life and not just our body.

    It would need to be more than “On a level of 1 – 10, how much pain are you in today or how long after getting up in the morning can you do this or that?”

    We all know that pain the level for what you can tolerate is different that what I can put up with before the need for OTC pills. It could need to be in the form of one of those magazine polls, like Rate your Mate, or How long will you live to be? kind of things.

    I know that RA has made it a little difficult, but not impossible for you to get around. For me mobility is not an issue (Yet). The disease is the same, but the affects are different for each of us. I am sure that you have had more than your share of lousy RA moments, but that does not mean because of that, the whole day or week was a loss.

    Is there a saying somewhere that goes something like this. “I have RA, It does not have me.”

  • Kelly Mack moderator author
    2 years ago

    Hi Eebtool, really appreciate your comment! Totally agree that another scale is needed and it does change with our experience of the disease. Sure, my RA is severe but I still do what I need to do. Maybe its a quality of life scale that is relative to our personal goals and health? Thanks for your support! 🙂 Best, Kelly

  • Richard Faust moderator
    2 years ago

    Thanks for writing Eebtool. I’ll make sure Kelly sees your post (note: I’m her husband), but first thought that you might be interested in this earlier article she wrote about assessing wellness, including where her current rheumatologist starts every appointment by simply asking her how she is doing: https://rheumatoidarthritis.net/living/assessing-wellness/.

    You are absolutely correct about the way RA effects everyone differently and the need to not let it “have you.” In that spirit, I thought you might also like this article Kelly wrote about being able to appreciate the health and abilities of others, while doing the best one can with the condition: https://rheumatoidarthritis.net/living/savoring-perfect-health/. Wishing you the best. Richard (RheumatoidArthritis.net Team)

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