Experiential knowledge of disability, impairment and illness: The reproductive decisions of families genetically at risk

Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that ‘experiential knowledge of disability’ plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes ‘experiential knowledge of disability’ and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of ‘disability’, ‘embodied experiences of impairment’ or ‘embodied experiences of illness, death and bereavement’ are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching ‘experiential knowledge of disability’ within these contexts which are able to account for the various contours of the embodied lived reality of life with ‘disability’.

© 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC

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Top Ten Destinations for Families

Traveling with a family can present a unique set of challenges. Not only does a destination need enough fun attractions to hold the kids’ interests, but it should be safe and have something to offer the adults as well. With that in mind, here is our list of the top ten destinations for family holidays.

Though Hong Kong can be a bit overwhelming, families with thick skins are rewarded with a once-in-a-lifetime travel experience. Amidst the towering skyscrapers and hectic streets there are a number of attractions like street markets, parks and temples. Outside of the city center the outlying islands are great for kids, as there are tons of outdoor activities like hiking and swimming. Don’t miss the Ngong Ping 360 cable car on Lantau that travels for 30 minutes over the scenic island to the Po Lin Monastery and the Tian Tan Buddha.

The Tian Tan Buddha on Lantau towers over the scenery at 112 feet.

This list just wouldn’t be complete without a luxury all-inclusive resort and the Beaches in Turks and Caicos is one of the best. The resort has three villages that sit on a pristine 12-mile beach and offers plenty of activities to keep the kids entertained, which will give the adults some time to relax. Water sports are a given, but there’s also a giant waterpark, teen nightclub and a video game den.

A beautiful white sand beach on Grand Turk Island.

London is a multicultural and fascinating city that is alive with history at every turn. Children will be fascinated to see its historical sights, like the Palace of Westminster and Tower Bridge, and to visit its great museums, like the British Museum with its artful curiosities and the Natural History Museum with its dinosaur exhibits. Adults can entertain themselves by taking in a show in the West End or exploring one of the city’s many street markets, like the Portobello Road Market in Notting Hill. Those looking for a family holiday elsewhere in the UK can check out the website Baby Friendly Boltholes, which specializes in kid-friendly vacation rentals.

A dinosaur skeleton at the Natural History Museum in London.

Though they may not be the first places to spring to mind, ski resorts are great destinations for family holidays. Whistler is a particularly good choice, as it has world-class skiing and breathtaking scenery. Adults will find plenty to do on and off the slopes, while kids can try their hand at skiing or snowboarding and other activities like luge and tubing. In the summer the area is a hot spot for hiking and cycling.

Skiiers on the slopes of Whistler in British Columbia.

The Algarve encompasses the southern coast of Portugal and is a popular destination for Britons looking to swap their foggy isle for some sunshine. Albufeira is the center point of tourism in the region and with good reason, as the city has several blue-flag beaches and plenty of shops, restaurants and golf courses. For kids there are water parks and just the resort life in general, with its days spent hanging out by the pool or swimming in the sea.

Albufeira is the largest resort town in the Algarve.

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Income Tax Statistics for Sample Families, 2003

Leonard E. Burman, Mohammed Adeel Saleem

The nonpartisan Urban Institute publishes studies, reports, and books on timely topics worthy of public consideration. The views expressed are those of the authors and should not be attributed to the Urban Institute, its trustees, or its funders.

Note: This report is available in its entirety in the Portable Document Format (PDF).

We are often asked about how much income tax a family would pay in a given situation. Table 1 shows total taxes that would be owed as well as the average tax rate for single individuals and families at different income levels.1 Table 2 shows the statutory income tax rate (the tax bracket) and the effective marginal tax rate for the same families. The tables assume a very simplified scenario: The tax filers are nonelderly, not blind, and all children are potentially eligible for dependency exemptions, the earned income tax credit, and the child credit (subject to income limits); the filer claims no other credits; income is comprised of earnings, capital gains, and dividends, where the fraction of income in capital gains and dividends reflects the average for each income group; itemized deductions equal 19 percent of income and the taxpayer itemizes if itemized deductions exceed the standard deduction; the filer has no other deductions or income. (See notes to tables for detailed list of assumptions.)

Table 1 shows that income tax liability can be negative for many families with children because of the refundable earned income tax credit and the child tax credit. So-called "refundable tax credits" are paid out as refunds even if the tax filer has no income tax liability. Both of these credits are designed to reward work and assist families with children. Up to a point, families can get larger credits the more they earn. (There is also a small refundable earned income tax credit for single people, but it applies to lower income levels than are shown in the table.)

At higher income levels, income tax liability trends upward because tax rates are progressive with income. Average tax liability is always significantly lower than the top statutory tax bracket of 35 percent — even for taxpayers with $1 million of income. Their average tax rate is about 24 percent. For low- and moderate-income families, having children reduces average tax rates because of dependent exemptions, child tax credits (for all but the lowest-income families), and, for low-income families, the earned income tax credit. At income s above $110,000 ($75,000 for heads of household and singles), the child tax credit starts to phase out; it is phased out entirely at an income of $129,001 for a family with one child, $149,001 for a family with two children, and so on. In addition, personal exemptions are phased out for high-income families, and are not available at all for families subject to the alternative minimum tax. As a result, high-income families can owe the same tax with six children as they would with none.

Note: This report is available in its entirety in the Portable Document Format (PDF).

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