Of disability pride and fear

Some time ago the editors of this website asked me to respond to Ben Mattlins critical article on Spinraza, the new drug treatment on the neuro-musculair disease SMA. They weren’t aware that I too, just like Mattlin, am a 54 year old person living with SMA.

The whole discussion on Spinraza is therefore not only of interest to me from a disability studies perspective, as the editors expected, but also something that touches my skin.
That it took me so long to write my response was not only due to SMA related delay, but also because I found it difficult to discover my one voice in this debate. In the Netherlands this debate started recently and focusses on the same issues Mattlin refers to. These issues are the enormous costs of the treatment and whether health insurance should cover these expenses, not only in the case of very small children who are expected to die without it, but also for adults who might benefit from the drug in delaying or even stopping the ongoing process of the SMA.

In the Dutch television program Nieuwsuur (January 26, 2018) Hann, a 41 year old woman, states that if the drug is denied to her, within five years she will not be able to do the things she still can do now. Most of all she fears to no longer be able to take proper care of her young children and remain a good mother. She considers this an injustice done to her and others and a bitter pill to swallow.
I do understand her. SMA slowly but surely takes away muscle-tissue and muscle-power, leaving the person to become more and more dependent on other people and on technical devices. As the disease comes closer to vital body functions it becomes more threatening toward leading an active and independent life and confronts you with more pain, fatigue and the need to let go of things in life that may matter.
But at the same time I think, listening to this SMA mother: You knew that SMA would affect your life more and more and you consciously chose to become a mother. That SMA would affect your motherhood is not done to you by the Dutch healthcare system or political unwillingness, but due to bad luck that was there all along. The strange thing is, that this mother, just as Mattlin and just like me, is a person that has always lived life to the max, being able to experience life with disability as a good life full of meaning and reciprocity towards others and society as a whole. She too was a advocate of disability pride, participation and parenthood. But suddenly, with the appearance of Spinraza, this mother starts doubting whether she will be a good mother if the disease isn’t stopped. Of course I do understand that this is in view of the lobby for finance, but nevertheless something changed in her perspective.

Looking at the disability pride Mattlin talks about, I was reminded by what in disability studies is called ‘the disability paradox’ (Albrecht & Devlieger, 1999). Many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these individuals seem to live an undesirable daily existence. Where society would expect (and judges!) life with disabilities as inferior, missing almost all good things and being colored by dependency, struggle and suffering, disabled people over-all don’t value their lives as less happy and of lesser quality than so-called non-disabled persons.
Albrecht & Devlieger: “Quality of life is dependent upon finding a balance between body, mind and spirit in the self and on establishing and maintaining a harmonious set of relationships within the person’s social context and external environment.” In the case of disability I would add that for quality of life the right support and facilities are also needed. These are the social factors and actors that make the difference between living with disability and leading a disabled life.
Mattlin is a perfect example of a disabled person who found this kind of balance in his life. Mattlin reflects on the disability paradox in a very plain way: disabled people do not seek cure and able-bodyness, not all of them, not always and certainly not at all costs. He has learned like many disabled people to be able to experience fully that he is good the way he is, and that his life and his body are good the way they are. He learned the power of activism towards negative judgments and to acknowledge that being disabled is to a large extent about an inaccessible and excluding society that needs to be changed. Mattlin got hold of self esteem and learned to value relations of care and of solidarity with and amongst disabled people. He learned to appreciate a fighting spirit for social justice and an inspiring combativeness. And in that process he identified with the proud disabled activist. He will not let Spinraza and the dream of ableism destroy that.

The question is whether Spinraza and all the media attention to the sudden horizon of possible treatment, doesn’t already break into this whether we like it or not.
Recently I spoke to someone working for the patient organization of neuro-muscular diseases. He told about the positive effect Spinraza sometimes has on little children. At the same time he was shocked to see how adults and families who always seemed to have a good balance in life and lived a happy, good quality life now suddenly see their lives turned upside down by the appearance of this drug. What they have been living with all the time as just being their lives and their bodies, is threatened by feeling this as injustice or threatening their quality of and opportunities in life.
It is not saying yes or no to the drug that intervenes in our lives, it is the existence of the drug itself that changes our playing field. It brings in a strong individualistic medical approach and pushes away a more contextual or social approach. The existence of medical-technical interventions may change living with SMA (or f.i. giving birth to a child with Down Syndrom in times of NIPT-test or deaf people not chosing for a Cochlear Implant for themselves or their child, as in the movie Sound and Fury) from a turn of fate into a political or ethical statement. That’s a heavy load for people to carry.

Mattlin takes this on the chin and makes a brave choice and statement. He would not take the drug, even if it would become accessible to him, even if it would be safe and effective for him. I admire him for his statement. But at the same time I also have some problems with his discourse.
Mattlin seems so convinced of his proud disability identity that he doesn’t seem aware of the dichotomy he creates with this: one is either happily and proudly disabled rejecting all ‘hankering for cure’ or one is desperately seeking for treatment and denies the disabled identity. However, life as I know it is not that static and rigid, but much more fluid and changeable. Mattlin says somewhere between the lines that he is afraid of losing what he knows. It sounds to me as if he is afraid that if his disabled identity changes, he will fall apart. I think that people are more coriaceous firm than that. If we are able to build a good life and self esteem with illness and disability, we must also be capable of living with changed and changing disability identities.
Mattlins position reminds me of the sharp discussions that have taken place within Deaf communities when the Coclear Implant (CI) became popular. Deaf people felt CI to be a threat to their culture and language. People who made the choice for CI either for themselves or their children were seen as traitors. With all exclusion that came along with that.
It is exactly that which I see as Mattlin’s other problem. He says everyone is free to do what he thinks is best regarding treatment. But he also states: “I’d have to face feeling like a traitor to the movement, a turncoat to the cause of disability pride” if he should ever take Spinraza. With that he puts a weight on disabled persons and a judgment that I do not accept from a fellow disability activist. He gnaws on the freedom of choice and opinion, which is especially painful towards disabled people who have been denied self control and choice so often.

To stick to the example of Spinraza we could say that the drug offers solace to some families, parents, children and may offer opportunities in future for adults with SMA. In a world and culture where we only learn to value independence and perfection of the body we are likely to value this far beyond any personal gains. That should make us aware and cautious.
Because Spinraza also takes something away from us, that Mattlin is very aware of: peace of mind regarding living with disability on the one hand. And on the other hand the awareness on social ex- and inclusion and the changes that are needed to make the disabled life an enviable life (as Ann Turnbull puts it).
Spinraza won’t be stopped… so it is our task as activists and ethicists to keep social awareness alive.

As for me? the reader of this article may wonder. If Spinraza was safe and affordable I just might take it, in the acknowledgement of both the value and the weight of living with SMA. Like a Deaf friend of mine said: “Yes, there is nothing wrong with disability. And yes, there is nothing wrong with non-disability. And yes, there is nothing wrong with change.” I’m not afraid per se of searching for new identities in solidarity with others.
But I also believe in the importance for room in ethical debates like this to say: “I don’t know”.

With thanks to my friends and disability partners Marie-Jose Calkhoven, Corrie Tijsseling and Eelke Kelderman.


For the article by Mattlin please look here

Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: high quality of life against all odds. Social science & medicine, 48(8), 977-988.

Ann Turnbull, keynote “Two Roads Diverged: Choreographing a Sense of Belonging for All”, 2nd Disability Studies Conference “The Art of Belonging”, Amsterdam, October 31, 2013

Picture on top:
Jude Conlon Martin, Bronze Trio (in Access Living Centre, Chicago)

About the author: Jacqueline Kool

Jacqueline Kool

Jacqueline Kool [1963] studied social work and theology in the Netherlands. She was co-founder of and works as ambassador for Disability Studies in the Netherlands (www.disabilitystudies.nl). She publishes in the area of participation and representation of disability experience and disability studies in which she is also working as a consultant. She published e.g. the books Goed bedoeld. Levensbeschouwelijk kijken naar handicap en ziekte (2002), on religious perception on disability, and Eros in de kreukels. Verhalen van lijven, leven en lust vanuit de kreukelzone (2010) on disabled women and sexuality.

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