Society is also to blame for thalidomiders' worsening health

Thalidomide was sold in the 1950s and 60s, initially as a sleeping pill and later to alleviate morning sickness. But when women took the drug during certain stages of their pregnancy, it had the potential to interfere with the development of the embryo or foetus.

Depending on the stage of embryo or foetal development at which the drug was taken, babies were born with morphological differences such as missing or shortened limbs; or differences to the ears, or internal organs.

In a large number of cases, if thalidomide was taken during the stage when essential organs were developing, the foetus was stillborn.

Worldwide, around 12,000 babies were born with body differences resulting from their mother taking the drug. It is estimated fewer than 3,000 are alive today. Their health is rapidly deteriorating, and many experience reduced mobility, joint degradation and chronic pain.

Many children affected by thalidomide were bullied at school and learnt coping mechanisms to get by.Luciana Christante/Flickr, CC BY

Thalidomide narratives focus mostly on the “tragedy” of the drug’s effects. But soceity’s reactions to thalidomiders' bodies and needs significantly contributed – and continue to contribute – to their negative well-being and worsening health.

Society’s reaction

Although improving today, public perception of thalidomiders has been extremely negative since they were born. This quote, from the 2001 book Dark Remedy: the impact of thalidomide and its revival as a vital medicine, paints a good picture of societal reactions to thalidomiders' unique appearance:

How did parents endure the shock of the birth of a thalidomide baby? The few who made it through without enormous collateral damage to their lives had to summon up the same enormous reserves of courage and devotion that are necessary to all parents of children with special needs and disabilities; then, perhaps, they needed still more courage, because of the special, peculiar horror that the sight of their children produced in even the most compassionate.

People were shocked by the emergence of thalidomiders. Some researchers argue their appearance made abortion more acceptable. One study, for instance, stated that the number of thalidomide babies born in the late 1960s in South Australia “greatly assisted the prominence given to the issue” of abortion reform.

Euthanasia was also on the cards for dealing with thalidomide “babies”. Some parents engaged in so-called “mercy killings” by giving their child barbiturates (heavy sedatives), for instance.

But other parents were able to resist the negative reactions to thalidomiders and become advocates for their child. They set their children up for a better future. Having loving and accepting parents meant the child would more likely end up in a regular school, for instance, and be supported to develop coping mechanisms to deal with their future challenges.

Thalidomiders' struggles

There is a basic understanding about how humans should perform everyday tasks using their arms and legs. So it remains difficult for people to accept individuals who eat with their feet and get around by crawling, rather than walking.

When thalidomiders reached school age, the negative attitudes towards them manifested in schoolyard bullying. Many disabled children experience bullying and some researchers argue the problem is growing.

Many thalidomiders overcame barriers, such as British comedian Mat Fraser.slipperroom/Flickr, CC BY

As thalidomiders grew up, many exhibited low self-esteem and a lack of confidence. Because of missing limbs, many struggled to gain independence, especially when their physical environment – such as homes, stairs and public transport – were not tailored to their difference.

Thalidomiders' unique ways affected employment prospects and work relationships. Many had to develop more coping mechanisms as adults to deal with negative reactions at work.

Of course, there are those who made it in the system the despite barriers and some reached great heights in their professions, such as German Opera singer Thomas Quasthoff and British comedian Mat Fraser.

Worsening health

Thalidomiders today have rapidly worsening health issues. Because some body parts were overused to compensate for missing limbs and to compensate, in part, for the lack of social accommodations (including adaptations of the physical environment), the body’s natural degradation occurred faster than in the general ageing population. This was particularly acute for the musculoskeletal system.

One study from Germany – that surveyed thalidomiders between 2010 and 2012 who were between 50 and 55 years old – showed the percentage of those who couldn’t work had increased from 7% in 1985 to more than 30% in 2011.

The study also showed the quality of life of these thalidomiders in their 50s was comparable to that of an 80-year-old; mostly due to health issues and pain.

This study triggered a response by the German parliament that led to an increase in financial support for thalidomiders in Germany.

Another 2013 study from Canada showed 64.1% of respondents were employed in 2013, compared to 73.3% in 1999.

The study also found that the fear of needing to permanently quit their jobs due to deteriorating health played on the minds of 31% of respondents. And 17% said they were no longer able to hold down a job due to their thalidomide-related health problems. This is concerning, as most rely on their income to meet their unique needs.

The Canadian studies, as with the German study, were part of lobbying efforts to obtain adequate support from the Canadian government. The campaign was a success and this year, the Canadian government increased support substantially by offering, for the first time, a monthly payment for Canadian thalidomiders.

Although the physical difference of thalidomiders is the product of thalidomide, how society treated, treats and continues to treat thalidomiders also has a significant impact on their quality of life.

Stay tuned for other instalments in the thalidomide series this week.

Gregor Wolbring is a thalidomider and is Vice President of the Thalidomide Victim Association of Canada.