Many years ago, when I was new to the world of chronic illness and disability, a chemically sensitive friend made a comment that resonated with me. She said, “Sometimes I wish I could just be thankful for help instead of having to be super, super thankful.”
Now that I’ve been on this journey for a while, I have a better understanding of the social dynamics that make us feel the need to be “super, super thankful.” It’s related to the ways that disability can be viewed, sometimes called models of disability.
1. The medical model – When disability is viewed through the medical model lens, it focuses on what is perceived to be wrong with someone’s body and on how it could be fixed. It sees deviance from the norm as evidence of defects that need to be addressed or diseases that need to be cured.
One of the challenges of this model is that medical professionals are given a great deal of power over people with disabilities. Patients with obvious, well-understood conditions are more likely to get the label and any help that might go with it than people with less-understood or more difficult to diagnose conditions who are equally limited.
Another problem with seeing disability solely through a medical lens is that it tends to put more focus on the condition than on the person as a whole and on what else they might want along with or instead of an altered body. In his excellent book Disability and the Church, Lamar Hardwick says that churches often ask the wrong question. They ask “Why aren’t they healed?” instead of “Why aren’t they here?” Disabled people want access, with or without healing.
2. The charity model – In the charity model, people with disabilities are seen as objects of pity who need help and guidance. Among the problems with this model is that the people offering help generally decide what kind it will be. It often involves making decisions for people that they would prefer to make for themselves.
3. The economic model – the economic model focuses on the monetary cost of a disability. If someone isn’t working a full-time job, it evaluates the extent of lost wages. If people are receiving support from government social programs, it focuses on how much is spent.
When people operate out of this model, the focus is generally on bringing the monetary cost of disability down. It tends to create a hierarchy among people with disabilities, with those able to work being valued more highly than those who are not. It also contributes to a prevalent fear and belief that people are somehow cheating the system, and receiving benefits they don’t deserve. This leads to seeing people with disabilities as threats to the economic well-being of others.
4. The moral/blame model – In the moral model, people with disabilities are seen as having somehow caused their own challenges. They are a result of sin, lack of faith, “bad karma,” or poor choices.
This model is more common in some groups (primarily religious ones) than in society at large, but a corollary in the wider society is the implied message that people are suffering from lack of knowledge or effort. The tendency of people to ask about the treatment modalities that disabled people have tried, or offer advice about medical interventions, diet, supplements, etc., is an indication that they believe people’s disability challenges are at least to some degree a result of ignorance or not trying hard enough to change their circumstances.
5. The inspiration model – In some respects, the inspiration model is the opposite of the charity model. In this view, people with disabilities are seen as inspiring and worthy of praise. Although most disabled people would prefer to be seen this way than as objects of pity, there are also negatives to this way of viewing others. In comparison to the charity model, where “help” is often offered, whether it’s needed or not, in the inspiration model, the idea seems to be that people with disabilities are strong and resilient and don’t need any help at all.
“Inspiration porn” is a term sometimes used when media depictions of disabled people are one-dimensional and seemingly designed to make non-disabled people feel good. A Forbes article notes many negative effects, including that inspiring stories of disabled people overcoming challenges can gloss over “underlying injustice and systemic failures that could be fixed if properly faced and addressed.”
6. The social model – The social model puts the focus on society rather than on individuals. It focuses on barriers to access and on removing them and changing attitudes. Differences among people are not viewed as defects in those who don’t fit the norm.
If a person with mobility issues is unable to access the second floor of a building, the medical model would say the problem is in the person’s legs. The social model would say that the problem is that the building only has stairs and no elevator.
For another example, think of the tallest and shortest people you know. If every door in every building was just barely large enough for the shortest people to pass through, being tall would be a disadvantage. If tall people were unable to pass through at all (they lacked the ability), they could be considered disabled. In this scenario, is the problem a person’s height or is it a social problem, where only the needs of the shortest people are considered?
7. The human rights model – The human rights model views disability through a lens of fairness and equity. It focuses on ways in which people with disabilities are treated as “less than” and works to change unjust practices. The Americans with Disabilities Act was an attempt to expand the civil rights of disabled people.
This brings us back to the need to be “super, super thankful.” Where does that felt need come from? Let’s look at the logical conclusions of some of the disability models for the answer. In the medical model, if you have a poorly understood condition, then people might not consider you “really disabled” or at least disabled enough to be worthy of helping. This is especially true if you don’t receive disability insurance payments. Qualifying relies both on proving medical need and on paying into the system, which is a problem for many people, including stay-at-home parents.
In the inspiration model, people are seen as not needing help, and in the moral/blame model they are seen as not deserving it because they caused or contributed to their own needs. Then there’s the economic model, which is perhaps the one that most contributes to the problem. In a world where resources are seen as finite and capitalism reigns supreme, those who aren’t seen as contributing to society in the ways it deems most valuable are likely to be viewed with tolerance at best and contempt at worst.
This all leads to the idea that disabled people should be exceptionally grateful for anything they receive, because they really don’t deserve much at all. I’m not talking just about government or monetary help. The friend who first expressed the need to be “super, super thankful” was talking about someone who gave her a ride to a medical appointment. People in the chemical sensitivity world often feel the need to express exuberant, abundant thanks for things like family members agreeing to be fragrance free for reunions, or friends that provide video access to events so we can be part of them.
Let me be clear in saying that the people who offer help aren’t always the same ones sending the message that we’re a burden or a drain on society and that we should therefore be extremely grateful for anything we’re offered. Sometimes they are, but sometimes we simply internalize the message that we get from society at large and our response to it becomes our default way of moving through the world.
I believe in the power of gratitude. Focusing on blessings and thanking God and others for all I’ve been given is an important part of maintaining my spiritual and emotional health. Giving thanks is something the Bible directs us to do and I’m convinced that’s in part because it’s so good for us.
So, if you’ve ever helped me navigate a world not built for me, metaphorically enlarged a door so I could pass through it, or helped me in any other way, let me take this moment to say that I’m truly grateful for your efforts. Truly. But, yeah, I wish the world wasn’t constantly sending me the message that I don’t deserve it.