Statement of Employment Support for People with Dwarfism
Little People of America (LPA) would like to extend its support to the plaintiffs in two Equal Employment Opportunity Commission (EEOC) lawsuits, both involving women with dwarfism. Employment discrimination remains a key issue in our community. LPA is dedicated to raising awareness around employment issues that face people with dwarfism and fully supports its members’ pursuit of any and all career opportunities.
Q: What is the definition of dwarfism?
Q. What are the most common types of dwarfism?
According to information compiled by the Greenberg Center at Johns Hopkins Medical Center and by the late Lee Kitchens, a past president of LPA, the frequency of occurrence of the most common types of dwarfism is as follows:
Proportionate dwarfism -- short-stature conditions that result in the arms, legs, trunk, and head being in the same proportion (relative size to one another) as in an average-size person -- is often the result of a hormonal deficiency, and may be treated medically, resulting in an average or near average height. There are not such treatments available for people with disproportionate short stature.
Although achondroplasia accounts for perhaps 70 percent of all cases of dwarfism, there are over 200 diagnosed types, and there are some individuals with dwarfism who never receive a definitive diagnosis and/or have a condition that is unique to themselves or their family.
Q: What is a midget?
Such terms as dwarf, little person, LP, and person of short stature are all acceptable, but most people would rather be referred to by their name than by a label.
Q: What is the medical prognosis of a person with short stature?
Orthopedic complications are not unusual in people with disproportionate dwarfism such as achondroplasia and diastrophic dysplasia, and sometimes surgery is required. A common problem, especially in adults, is spinal stenosis -- a condition in which the opening in the spinal column is too small to accommodate the spinal cord. People with this condition suffer from numbness and/or pain. It can be treated with a type of surgery called a laminectomy.
Q: Is dwarfism considered a disability?
Q: Are people with dwarfism able to participate in athletic activities?
The Dwarf Athletic Association of America (DAAA) organizes competitions at the annual convention of the Little People of America.
Q: I've heard that car airbags can be dangerous to people of short stature. Should I have the airbag in my car disconnected?
Q:Can average-size people become the parents of children with dwarfism?
Q: Can short-statured couples become parents? Of children with dwarfism? Of average-size children?
Q: Has the gene for achondroplasia been discovered?
Q: What is LPA's position on the implications of these discoveries in genetics?
The short statured community and society in general have become increasingly aware of eugenics movements (efforts to improve human qualities by selection of certain traits) in medical history in the U.S. and abroad and the traditional desire of parents to create perfect, healthy children. Along with other persons affected by genetic disorders, we are not only concerned as to how our health needs will be met under dramatically changing health care systems, but how the use of genetic technologies will affect our quality of life, medically, as well as socially. What will be the impact of the identification of the genes causing dwarfism, not only on our personal lives and our needs, but on how society views us as individuals?
The gene for achondroplasia, the most common type of dwarfism, was discovered in 1994. Achondroplasia is caused by a gene mutation that is the same in 98% of the cases. The mutation, affecting growth, especially in the long bones, occurs early in fetal development in one out of every twenty thousand births. Since the achondroplasia gene discovery, genes for many other forms of dwarfism have been located and identified, including those for spondyloepiphyseal dysplasia, diastrophic dwarfism and pseudoachondroplasia. These discovers occurred much more rapidly than either the members of Little People of America (LPA) or the medical community had anticipated. Suddenly and unexpectedly, LPA was placed right in the middle of the medical, social and ethical debate surrounding the brave new world of genetic technology. At that time, formal discussions and education on genetic issues had not yet begun within LPA. Most of us, like most of society, had limited knowledge about the Human Genome Project and the social and ethical implications associated with the possible applications of genetic technology. On one hand, the breakthrough may be used to help achondroplastic couples to identify a fetus with "double dominant" or homozygous achondroplasia, a fatal condition that occurs in 25% of births to those couples. It is also possible that the tests for genes causing short stature will become part of the increasingly routine and controversial genetic screening given to all expectant mothers.
LPA's discussion of these possibilities brought forth a strong emotional reaction. Some members were excited about the developments that led to the understanding of the cause of their conditions, along with the possibility of not having to endure a pregnancy resulting in the infant's death. Others reacted with fear that the knowledge from genetic tests such as these will be used to terminate affected pregnancies and therefore take the opportunity for life away from children such as ourselves and our children. The common thread throughout the discussions was that we as short statured individuals are productive members of society who must inform the world that, though we face challenges, most of them are environmental (as with people with other disabilities), and we value the opportunity to contribute a unique perspective to the diversity of our society.
LPA is revitalizing its public education campaign, so that people of all sizes, including potential parents and health care professionals, will be properly informed of the realities of life with short stature. LPA is made up of over five thousand individuals with more than a hundred types of dwarfism, their families, a medical advisory board, and other friends and professionals. We are teachers, artists, lawyers, doctors, accountants, welders, plumbers, engineers and actors. We represent every nationality, ethnic group, religion and sexual orientation. Many of us have secondary disabilities as well. We are single and married, with families with spouses, parents and children who are average size and dwarfed, biological, and adopted. For LPA members there is a common feeling of self-acceptance, pride, community and culture. Since 1957, LPA has provided peer support, social and educational opportunities to thousands of individuals with dwarfism and their families. We have been educating society and the medical community about the truths of life with short stature and working to dispel commonly held myths. With the discovery of various genes and mutations causing dwarfism, our educational and advocacy efforts have become ever more important, in the face of a rapidly changing genetic frontier.
Q: We are parents of a newborn child who has been diagnosed with achondroplasia, and our pediatrician doesn't know anything about it. What should we do?
Q: We have heard that very young achondroplastic children can run into a variety of complications. What should we be looking for?
All children with achondroplasia should have screening tests for these complications in the first year of life: imaging (CT or MRI) of the head, including the the base of the skull, and a sleep study.
These problems, as well as others, are discussed in more detail in "Health Supervision for Children with Achondroplasia."
Q: My dwarf child will soon undergo surgery. What special considerations regarding anesthesia should be taken into account?
Please be sure your child's doctors have seen the article Dwarfs: Pathophysiology and Anesthetic Implications," by Berkowitz, Raja, Bender, and Kopits, in the October 1990 issue of the medical journal Anesthesiology(Volume 73, Number 4, pages 739-759). (Note: The full text of this article is available in the LPA Online Libraryand the LPA Medical Resource Center)
Q:Does Little People of America have any special resources for parents?
Q: We've heard about an operation to lengthen an achondroplastic dwarf's legs and arms that can make them a similar height as their peers. Should we consider this?
Resources on extended limb-lengthening, including the LPA Medical Advisory Board's assessment and a personal essay by a woman who successfully underwent the surgery, are available in the LPA Online Library.
Q: Is it possible to adopt children with dwarfism?
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