Dwelling and Working as an Engineer With Grownup Onset Incapacity

“Living and Working as an Engineer with Disabilities in Adults” was written by SWE Member Rose Byrne, PhD, MAM, BS.

An unwanted visitor and some personal risk management

Rose Byrne

First, let’s redefine the problem. Medically, something bad is happening to you. In my case it was multiple sclerosis (MS). My symptoms prevailed three months after starting my first “real job” with my doctorate “almost done”. However, this problem didn’t make me a non-person or an engineer anymore. I announced my diagnosis fairly early while the reasonable arrangements I needed were easy for my employer to implement. I thought about what else I had to offer my employer and how satisfied they were with my work. But MS meant I was unable to perform some peripheral expected tasks, and it meant I had to take some significant blocks of vacation during the flare-ups (exacerbations). Most of the time, however, I was able to do almost anything during the remissions, at least at first. By emphasizing my skills and suggesting accommodation that made sense to both my employer and me, and by dealing with a reasonable employer, I have been able to work very productively for eight years. I did my PhD while working full time. As my MS progressed, I needed additional housing, including a reduction in working hours. So the later part of my experience was part time. Eventually my MS became secondary progressive and I could no longer work. At that point, I had to retire from debilitating MS fatigue. Some people with MS can work for 20 years.

Disabilities in adults at a glance

There are many disabilities known as adult disabilities that appear in adulthood. For example, some forms of blindness occur in adulthood. What can be done to alleviate the consequences of a person should it strike? What can be done to reduce the likelihood of experiencing it?

Some disabilities are partly genetic. MS is a 1 in 300 chance risk for a woman and a 1 in 600 chance risk for a man. There are currently 233 genetic variations involved. What everyone is doing is currently unknown. What is inherited in MS is susceptibility to the disease, not the disease itself. It is currently impossible to predict how severely and how a particular patient will be affected when diagnosed. If the variability is large enough, an average is largely non-informative.

MS or any other disability has economic consequences. Depending on initial job responsibilities and the nature of the disability, one may need to accept lower status and lower wage assignments in order to continue working for as long as possible. The person with a progressive disability such as MS is often forced to quit work before the normal retirement age.

How can economic burdens for people with disabilities be reduced?

The economic consequences are those that are most dependent on management. If you are aiming for an advanced degree, you have an option that was not available during my studies. Now you can pay into social security by voluntarily paying social security, which would have been withheld if you had a W-2 job. Some schools and states have Social Security GRAs and GTAs, but some schools do not. Increasingly, people are working full-time while returning to graduate school part-time. If the employer determines the need for an advanced degree, he can offer to assist with the payment. In any case, you will accumulate social security credits while working in a job where social security is withheld (or, in rare cases, where the employer pays both the employer’s and the employee’s share of wage tax). If one is not disabled, for example, the impact of a GTA job on retirement would be small. However, if one becomes disabled, these social security credits can be extremely helpful. Social security requires that a certain number of credits and an additional number of recently granted credits qualify for SSDI at all.

In addition, saving while at work makes a huge difference in whether or not someone is disabled. When someone becomes disabled and has to stop working before the normal retirement age, it becomes very important. Savings in the employer’s retirement benefit plans (401 (k) or analogous), especially if they match at least partially and are available in the event of a disability pension, are particularly helpful if one has to retire before the normal retirement age. Savings outside of the retirement plan are also important, especially when waiting for disability benefits, which in many cases can take a long time. Medicare only starts two years after SSDI. If the employer offers a long-term disability pension in addition to SSDI, it can be extremely helpful. Someone who has taken out private disability insurance or long-term care insurance and is disabled after a waiting period has elapsed receives the benefit that has been used.

What resources are there for disabled people?

Note: The following information is intended to be helpful but not exhaustive. Please speak to an attorney if you need legal advice.

Groups like the National Multiple Sclerosis Society (for MS) often have very useful information about the disability and its consequences and resources for treating it. Some groups, such as NMSS, provide generally applicable information that is also available to people with other disabilities. Wikipedia has a lot of information on civil rights laws for people with disabilities, but you need to know where to look. NMSS has a large amount of reasonable accommodation information, information on redress information, and a large number of websites and publications.

People with disabilities often have problems outside of work, for example in health care. The US Department of Justice’s ADA website, ada.gov, contains a number of ADA settlements dealing with healthcare. Know all parts of the ADA and other laws that affect the disabled. If you are not affected, please stand up for those affected. Some helpful resources, mostly related to employment, are included below.

For further reading

  • nationalmssociety.org (National MS Society), especially the downloadable publications:
    • Know your rights (Written by attorneys, explains rights and laws that grant rights; the last section contains resources that are especially useful when you cannot find adequate housing and laws)
    • Brochure: Win-Win Approach to Reasonable Accommodation to Increase Productivity at Work
    • Article: What Are Adequate Housing And How To Get It?
  • adata.org (from an organization advising the US Department of Education)
  • ada.gov (from the US Department of Justice)
  • ssa.gov/benefits/disability/ (from the Social Security Authority)
  • Wikipedia articles are always changing, but I found helpful articles entitled:
    • Disability in the United States
    • Americans with Disabilities Act 1990
    • ADA Amendments Act of 2008
    • Rehabilitation Act 1973
    • Law on Innovation and Labor Opportunities
    • Social Security (USA)
    • Social Security Disability Insurance
  • Getting to Yes: Negotiate the agreement without giving in. (Book, e-book or PDF by Roger Fisher and William Ury)
    • This book is helpful for all types of negotiations, especially those where you are less powerful than the negotiating partner and therefore have a bad BATNA (best alternative to a negotiated agreement). If you’re asking for decent accommodation, your BATNA is likely to be particularly weak. However, you should know your BATNA before asking for adequate accommodation in case you need one. ADAAA gives you a better chance at negotiating or BATNA than the 1990 ADA. If you fall under the 1973 Rehabilitation Act, the placement process will be more familiar to your employer, but you can still only negotiate something “reasonable” that is for all parties are beneficial. The ADAAA made it clear to the Supreme Court that Congress and the President intended to read the 1973 ADA and Rehabilitation Act broadly rather than narrowly, adding the possibility of fines from the DOJ instead of private lawsuits, but “appropriateness” remained required.

I made some contacts a few years ago, but can no longer do so. What I do mostly now with my very short effective day is to write poetry for my own pleasure. Here is one of my poems:

Poets and engineers

If more engineers were poets

Even if they wrote

Mainly for their own entertainment,

More engineers would learn

Express yourself in words.

When they learned to be a poet

You would add

A technical, scientific and practical

Perspective from engineering to poetry.

Poetry would benefit from it

Underrepresented life experiences

What poetry would

Transform yourself into new poetic voices.

If more poets were engineers

Less poets would

Live in attics.

It seems that almost everyone

Successful and solvent poet

Also have another job.

Why not practice engineering?

Engineering makes a demanding one

Major and career,

Demanding creativity

Regarding restrictions.

That experience would

Help everyone develop

Your individual poetic voice.

  • Living and working as an engineer with a disability among adults

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