Living and Working as an Engineer With Adult Onset Disability

In observance of Multiple Sclerosis Awareness week (March 7-13, 2021) and SWE's ongoing efforts to keep inclusion at the forefront of our minds, SWE Member Rose Byrne shares her story about living and working as an engineer affected early in her career by a Multiple Sclerosis diagnosis.

“Living and Working as an Engineer With Adult Onset Disability” was written by SWE Member Rose Byrne, PhD, MAM, BS.


An unwelcome visitor, and some personal risk management

Living And Working As An Engineer With Adult Onset Disability
Rose Byrne

First, let’s reframe the issue.  Something adverse happens to you, medically.  In my case, it was multiple sclerosis (MS).  My symptoms asserted themselves three months after I started my first “real job”, with my P.h.D. “almost done.”  Yet, this issue did not make me a nonperson, or no longer an engineer.  I disclosed my diagnosis fairly early, while the reasonable accommodations that I needed were easy for my employer to implement.  I thought about what I still had to offer my employer, and how pleased that they were with my work.  But MS meant that I could no longer do some peripheral expected duties, and it meant that I would need to take some substantial blocks of leave during flare ups (exacerbations).  However, most of the time, during the remissions, I could do almost everything, at least at first.  By emphasizing my abilities, and proposing accommodations which made sense for both my employer and me, and dealing with a reasonable employer, I was able to work for eight very productive years.  I completed P.h.D. while working full time.  As my MS progressed, I needed additional accommodations, including a reduction in work hours.  Thus, the later part of my experience was part time.  Eventually my MS became secondary progressive and I could no longer work.  At this point, due to debilitating MS fatigue, I had to take disability retirement.  Some people with MS can work for 20 years.

Adult onset disabilities, at a glance

There are many disabilities, known as adult onset disabilities, which appear in adulthood.  Some forms of blindness, for instance, strike during adulthood.  What can be done to ameliorate the consequences of one, should it strike?  What can be done to lessen the probability of experiencing one?

Some disabilities are partially genetic.  MS is an overall 1 in 300 probability risk for a woman, 1 in 600 probability risk for a man.  There are 233 genetic variations currently implicated.  What each one does is currently unknown.  What is inherited in the case of MS is vulnerability to the disease not the disease itself.  It is presently not possible to predict at diagnosis how severely, and in what manner, a given patient will be affected.  If variability is big enough, an average is largely non informative.

MS, or any other disability, has economic consequences.  One may have to accept lower status and lower pay assignments, depending upon ones initial job responsibilities and the nature of the disability, to keep working as long as possible.  The person who has a progressive disability, like MS, often has to stop working before the usual retirement age.

How can economic burdens for those with disabilities be alleviated?

The economic consequences are the ones most subject to management.  If one is pursuing an advanced degree, one has an option which did not exist while I was in graduate school.  Now, one can pay into Social Security by voluntarily paying Social Security what would have been withheld if one had a W-2 job.  Some schools and states have GRAs and GTAs under Social Security, but some schools do not.  Increasingly, people are working full time while going back to graduate school part time.  If the employer identifies the need for the advanced degree, they may offer to help pay for it.  In any case, if one is working at a job in which Social Security is being withheld (or the infrequent case in which the employer pays both the employer share and the employee share of payroll taxes), one is accumulating Social Security credits.  If one does not become disabled, the effect on retirement benefits from a GTA job, for instance, would be small.  However, if one does become disabled, those Social Security credits could become extremely helpful.  Social Security has a requirement for a given number of credits, and another number of recent credits, to qualify for SSDI at all.

In addition, saving while employed makes a big difference, whether or not one becomes disabled.  If one does become disabled, and has to stop working before the usual retirement age, it becomes very important.  Savings in the employer’s retirement plans (401 (k) or analog), especially if it is matched at least partially, and is available in case of disability retirement, is especially helpful if one must retire before the usual retirement age.   Savings outside the retirement plan are also important, especially while waiting for disability benefits, which can be a long time in many cases.  Medicare doesn’t start until SSDI for two years.  If one’s employer offers a long term disability benefit that is in addition to SSDI, that can be extremely helpful.  Someone who purchased private disability insurance or long term care insurance who becomes disabled after any waiting period has been completed will be the recipient of whatever benefit was purchased.

What resources exist for disabled individuals? 

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

Groups, such as the National Multiple Sclerosis Society (for MS) often have very useful information about the disability and its consequences, and resources for managing it.  Some groups, like NMSS, make more generally applicable information available, available also to people with other disabilities.  Wikipedia has a lot of information about the civil rights laws applicable to people with disabilities, but you have to know where to look.  NMSS has a lot of information about reasonable accommodations, information about legal remedies, and a large number of websites and publications.

People with disabilities frequently encounter problems outside of work, too, such as in healthcare.  The US Department of Justice’s ADA website, ada.gov , has a number of recent ADA settlements involving healthcare.  Know about all the parts of the ADA and other laws affecting the disabled.  If you are unaffected, please advocate for those who are affected.  Some helpful resources, mostly regarding employment, are attached below.

For Further Reading

  • nationalmssociety.org  (National MS Society), particularly the downloadable publications:
    • Know Your Rights   (Written by lawyers, explains rights and laws granting rights; last section contains resources mostly useful in case you can’t get a reasonable accommodation, plus laws)
    • Brochure: Win-Win-Appoach-to-Reasonable-Accommodations-Enhancing-Productivity-on-Your-Job
    • Article: What Are Reasonable Accommodations and How to Get Them
  • adata.org (by organization advising US Department of Education)
  • ada.gov (by US Department of Justice)
  • ssa.gov/benefits/disability/   (by Social Security Administration)
  • Wikipedia articles change continually, but I found helpful articles entitled:
    • Disability in the United States
    • Americans With Disabilities Act of 1990
    • ADA Amendments Act of 2008
    • Rehabilitation Act of 1973
    • Workforce Innovation and Opportunity Act
    • Social Security (United States)
    • Social Security Disability Insurance
  • Getting to Yes: Negotiating Agreement Without Giving In. (Book, ebook, or pdf, by Roger Fisher and William Ury)
    • This book is helpful for all kinds of negotiations, particularly ones in which one is less powerful than negotiating partner, and one therefore has poor BATNA (Best Alternative To a Negotiated Agreement).  In asking for Reasonable Accommodation your BATNA is liable to be particularly weak, but you should know your BATNA before asking for Reasonable Accommodation if you need one.  ADAAA gives you a better chance at prevailing in negotiation or BATNA, I understand, than ADA of 1990 did.  If you are covered by Rehabilitation Act of 1973, the accommodation process is more likely to be familiar to your employer, but you can still only negotiate something “reasonable”, that is, agreed to be beneficial to all parties.  ADAAA made clear to Supreme Court that Congress and President intended ADA and Rehabilitation Act of 1973 to be read broadly rather than narrowly, and added possibility of DOJ fines rather than private lawsuits, but “reasonableness” still required.

I did some outreach a few years ago, but am no longer able to do so.  What I mostly do now, with my very short effective day, is write poetry for my own enjoyment.  Here’s one of my poems:

Poets and Engineers

If more engineers were poets,

Even if they wrote

Chiefly for their own amusement,

More engineers would learn  to

Express themselves in words.

When they learned to be poets,

They would add

A technical, scientific, and practical

Perspective from engineering to poetry.

Poetry would gain from

Underrepresented life experiences

Which poetry would

Turn into new poetic voices.

If more poets were engineers,

Fewer poets would

Be living in garrets.

It seems that nearly all

Successful and solvent poets

Also have another job.

Why not practice engineering?

Engineering makes a demanding

Major and career,

Demanding creativity

With respect for constraints.

This experience would

Help each one develop

Their individual poetic voice.

Author(s) Information

  • Living and Working as an Engineer With Adult Onset Disability adult onset disability

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